Why I divorced the Susan G. Komen Foundation years ago

February 3rd, 2012 § 273 comments

I’ve been public about my criticisms of the Susan G. Komen Foundation for a few years. That criticism has not been easy; after all, I’m criticizing a huge organization which claims to be committed to finding a “cure” for the disease I have. Even my choice of words there is related to my criticism of Komen; I think they need to focus less on a “cure” and more on acknowledging and helping women deal with cancer after their initial treatment and/or those women like me who have metastatic breast cancer. Survivors, and there are more and more of them, have long term physical needs, psychological concerns, and medical issues that are unique.

I started out like many breast cancer women do, looking to give something back when I finished my surgeries and chemotherapy. I was energized, and wanted to help. Of course, the Race for the Cure in Central Park is one way to do that.

In 2008 I joined a family friend and her fellow Yale students for the Susan G. Komen Race for the Cure.

 

 

 

 

 

 

 

 

 

 

 

 

 

I believed I was a part of something big, meaningful, important.

The following year I asked my parents if they would join me at the Race for the Cure to mark my 40th birthday. At my birthday party I eschewed personal gifts and asked instead that guests donate to our family team. We raised almost $15,000 that year between the party and other donations. My mother (a stage III cancer survivor) and I walked in our pink t-shirts with my father and my daughter Paige.

 

 

 

 

 

 

 

 

 

 

 

 

I wrote a piece in 2009 (titled “A Walk in the Park) about the experience. I’m including the text here because I think it shows my commitment to the cause, to that day… at least what I thought that day meant.

 

“More than just a walk in the Park.” 

That’s the catchphrase that the t-shirts sponsored by Duane Reade had on them at the Susan G. Komen Race for the Cure yesterday. Clever. You spend a lot of time reading people’s backs while you walk the 5k. 

Some people just have their registration numbers. 
Some have bright pink signs that read “In Celebration of” or “In Memory of.” 
Sometimes it’s one name. 
Or two. 
Or a list. 

I didn’t wear a pink sign.
My list was too long.
You guys know who you are.
It would have been a long list.

And then it would have said:
Mom.
Me.

Sometimes there is a photograph or drawing on walkers’ pink placards. 
Or a drawing of some hearts. 
Sometimes the writing is neat, businesslike, easy to read. Sometimes it’s in a child’s handwriting. 
Sometimes it’s hard to read, in magic marker or crayon. 
Sometimes there are stickers. 
Sometimes it’s a full name, 
Sometimes it’s more familiar,
“Aunt Cathy” or “Grandma Rainey.” 

It might be “Mom,”
or “Nana”
or “Bubbe.” 
“My sister.” 

There was a man walking in front of me for almost a mile whose bright pink sign said “In Celebration of ME.” Male breast cancer is not common, but it’s real, and it can be very aggressive. How hard it must be to be a man with breast cancer, I pondered. It’s almost always talked about as a woman’s disease.

There was a t-shirt that said “Pink is the new purple” on the back. We followed it for a few minutes, unable to figure out its meaning. We kept hypothesizing what it meant. Finally my mother ran ahead a few steps and asked the young woman in her 20s what it meant. My mom returned with the explanation:
Her sister had breast cancer. 
Her sister’s favorite color was purple. 
Her sister had died of breast cancer. 
She was walking in her sister’s honor; 
Therefore, pink was the new purple. 

There was the man we caught up to and quickly passed who did the whole route limping heavily, walking with a cane. “Wow,” Paige said, “that must be really hard.” 

“Yes,” I said, “That’s what this day is all about. 
It’s not about going the farthest distance. 
It’s not a marathon. 
It’s not about pushing your body to do the most it can do. 
They make this race a distance that lots of people can do. 
Even cancer patients who are in the middle of their treatment.
They want to include everyone: 
Moms with strollers, 
people in chemo, 
that man with his cane. 

It’s about raising money, 
not about making the walk too hard that people can’t do it. 
It’s about bringing people together.”

There were families. They forced me to struggle to keep composure. Dads with children. Usually they had matching t-shirts with pictures of a woman on them. They all said a woman’s name and then “Mommy, we miss you.” These were families grieving women who were taken from them. Families who had lost their queen to breast cancer.

Twenty-five thousand people were there yesterday. 
We were only four of them. 
Everybody had a story. 
My mother and I were only two of those breast cancer stories. 

We were united yesterday with a purpose: To keep our daughters, nieces, and friends from having to go through what we did. 
The distance wasn’t far to walk. 
The distance we have to go to find a cure is. 

I don’t personally know that I believe a cure is possible. 
I don’t think in those terms. 
I do believe that the advances we have made/are making in improving treatment are real. They help in terms of lower recurrence rates (fewer women get cancer again after having it once), higher survival outcomes (fewer women die from their cancer), and better quality of life. Even if we can’t find a cure, I believe that the more money we can get into the hands of scientists and foundations to help get women the care they need for their bodies and their minds can only be good. 

I wore pink and walked side-by-side my mother yesterday. 
I felt lucky to have her with me. 
I felt lucky that she was alive to be next to me after being diagnosed with stage III breast cancer. 
I couldn’t treasure her more than I already do. 
But this disease is one thing I don’t want Paige to have in common with us. 

It was a great day yesterday. 
Paige and I woke up tired this morning, but happy. 
Last night when we pulled into the garage I gently shook her awake. 
I told her how proud I was of her. 
I told her how happy Nana and I were that she had been with us. 
How great it was that we had made a memory like that together.
How proud she should be that she and I had raised about $7000 for Komen for the Cure. 

It really was more than just a walk in the Park. 

So much more.

…………………………………………………..

In fact, the last time I spoke to my mother-in-law before she was killed in a car crash was a phone call she made to tell us how proud she was of us for raising so much money for Komen.

But after that event my feelings started to change. My health was still affected daily by the aftermath of my cancer. I started to be bothered by staplers with pink ribbons on them and football players decked out in pink sweatbands. I started to dread October’s ubiquitous pink ribbons in the name of Breast Cancer Awareness Month. Facebook status updates with women writing in silly code about where they leave their handbag as a veiled hat tip to breast cancer “awareness” started to bother me more and more. Soon friends and I started a contest; we would snap photos of the craziest products we could find with a pink ribbon on it. When Komen partnered with Kentucky Fried Chicken and Mike’s Hard Lemonade, people started wondering about some of the choices Komen was making; after all, fatty processed foods and frequent alcohol use are risk factors for breast cancer. I wondered, too.

As I’m feeling worse about all of this “pinkwashing,” I learned that Komen was getting litigious against everyone from kids to business owners trying to raise money for cancer charities. Why? Because Komen said that only they could use the phrase For the Cure (a brief overview here). I love what Stephen Colbert said:

Anybody who knows me knows I am a huge supporter of the Susan G. Komen for the Cure foundation, which raises millions of dollars a year in the fight against breast cancer . . . So I’m giving a big Tip of my Hat to the Komen foundation for spending almost a million dollars a year in donor funds to sue these other groups. If they don’t own the phrase “for the Cure,” then people might donate money thinking it’s going to an organization dedicated to curing cancer, when instead it’s wasted on organizations dedicated to curing cancer.

………………………………….

By this point I was getting more and more annoyed with Komen’s corporate actions that simultaneously limited the language others used to raise money for cancer research while expanding its own pink grasp seemingly without standards. I stopped raising money for them. I felt the Komen organization was putting a happy face on breast cancer, and not paying attention to the often-unpleasant realities of life as a survivor (including recurrence). Survivorship isn’t always always smiles and pink ribbons. I wrote one of my most popular posts “These things are not tied with a pink ribbon” to capture some of those feelings:

I wish I had the energy of my youth.
I wish I had the body.
I wish I had the fearlessness, the spunk, the drive.

I wish I could have a conversation with that young girl,
bright-eyed and full of wonder.
I wish I could tell her what lay ahead.

I wish I could tell her to gather strength, and wisdom, and patience like a squirrel gathering acorns for the winter.
“Save those things up,” I’d say, “you are going to need them… every last bit.”
I wish I could share the perspective I’ve gained along with all of the love.

But I can’t go back to that time,
I can’t go back to that place.
I can’t rewrite what’s happened,
I can’t do it all again.

I guess I must have done something right along the way for when it came time to fight I did,
and I did it well.
But that struggle took its toll on me and I am quite sure I will never, ever be the same.

You tell yourself “they’re only breasts.”
You say, “I don’t need ovaries, I’m done having children.”
But that obscures the truth.
The truth is that it does matter,
they do matter.
They say my uterus is atrophied.
It almost sounds funny when you say it.

“Who cares? What does that matter?”
It does. It does. It does.
To get rid of all hormones gives me a better chance at avoiding a recurrence, but there is a price to be paid.
No estrogen matters more than I ever thought it could.

It feels worse than taking injections to suppress my ovaries, worse than taking Tamoxifen. Those were easy. I had no clue what was ahead.

I wear the skirt, I put the makeup on, I walk the walk.
But I do not feel like a woman anymore.
I’m proud of what this body has done for me:
3 beautiful children,
surviving cancer,
healing the broken bones, the infections, the autoimmune diseases.
There is no week without migraines,
no cold winter day without icy implants.

Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.

While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.

These things are not tied with a pink ribbon.

These things last longer than a month.
This is part of awareness.

This is part of what breast cancer can do.
This is what it has done to me.

 ………………………………….
By the time the Planned Parenthood de-funding was announced this week, I was already gone. For years, mail from Komen always went unopened, and a phone call asking if I would be re-registering a team for the Race for the Cure had been met with an emphatic No. I had left the cult of the pink ribbon, and it saddened me that I found it necessary to do so.

So this week I am grateful that I can look at my decision as the right one. When I saw Nancy Brinker (sister of Susan G Komen and the founder and CEO of Komen for the Cure) on MSNBC and how she engaged in what Barbara Boxer correctly termed “revisionist history” I was stunned (click here to either watch the video or read the transcript). This isn’t a woman who speaks for me. This isn’t a woman I want in charge of donations I make. This isn’t even, in my mind, a woman who is in touch with reality.

I’m allowed to vote with my pocketbook. I have dollars I opt to give to charity and Nancy Brinker, they don’t come to your address anymore.

Many people may be surprised this week that Komen isn’t everything they wanted from a breast cancer charity; I’m not surprised. I’m actually glad that this week has brought some of Komen’s actions to light so that others may decide how they want their dollars spent.
I think a better name for them is Susan G Komen For(got) the Cure.
*In October of 2012, the year I wrote this piece, I was diagnosed with a distant recurrence of my breast cancer… I have metastatic, incurable breast cancer. I have revised a few words in the piece to reflect my status. Since that time I’ve learned more about SGK’s history of ignoring metastatic patients in their print campaigns. Only a few years ago did they first put a person with stage IV disease in an ad, and even then they put a happy face on it, concentrating on the woman’s hope and future. That woman has since died from metastatic breast cancer. Rather than educate about the only type of breast cancer that actually KILLS (and was the cause of death of its namesake, Susan Komen), SGK has opted to again pinkwash the reality of this disease.
Some have asked where I think donations should go. Not enough money goes to research into metastatic breast cancer and advanced disease. I have established a fund at Memorial Sloan-Kettering that is earmarked for this research. You can see my page here for it. The money goes to research. Another good place is Metavivor.

§ 273 Responses to Why I divorced the Susan G. Komen Foundation years ago"

  • Julie says:

    My mother lost a breast to cancer in February of 1984. She just turned 81. As much as I worry, and as much as I know I could be next, after this fiasco (and the, yes, Pink Mike’s Lemonade and that damn gun) Komen will never receive a cent from my household.

    And that’s a shame.

    Because Cancer knows no party-lines, and it also knows no economics. But thanks to this I now know of many other organizations who would be happy to have my charitable donations.

    • dave says:

      The author says Komen.$ should focus “LESS’ on a cure. Dumbest thing I ever heard. We should focus less on awareness; everyone is aware. We should focus less on $6 figure salaries for Komen executives when the American Cancer Society already exists.

      Remember, for every woman who dies of breast cancer 6 die of heart disease.

      To the author, I bet breast cancer is terrible. I bet feeling sorry for yourself never helped you.

      • Lisa Bonchek Adams says:

        Leaving aside some of your ill-toned jabs, the ACS is not without big question marks: this 2011 analysis reveals the CEO had more than $2 million in compensation. And 20-30% of $ donated goes to fundraising.
        http://m.wsbtv.com/news/news/american-cancer-society-where-does-your-money-go/nFX4j/

        I think many of the big charities need to be looked at very closely. I only donate now directly to places giving research grants for both treatments to keep
        metastatic patients alive and for groundbreaking work that will hopefully find a cure, even if only for certain types.

        • Niko J says:

          Where do you donate to? Please email me the places at skinartby.niko@gmail.com. I’m thinking of doing a fundraiser with one of my designs and this would be helpful. Thanks in advance, Niko J

          • Melinda Atsavinh says:

            Copays.org is a good one they have helped many of our patient’s

          • Emily Brown says:

            Greenzinnia.org is a great 501c3 non-profit.
            All the money donated goes directly to helping women with cancer, nobody in the organization is financially compensated.

            The people that run this non-profit are completely dedicated to not being pink washed and not wasting money on anything that doesn’t directly help women with cancer.

            They work with women that have all cancers, not just breast cancer and they provide funding for wigs for women who have lost their hair, they run resume classes for women and men who are rejoining the workforce after being out with cancer or changing jobs and they send information on living with cancer all around the US.

            They are a national charity and they do amazing work and ask nothing in return. It’s so easy to work with them when you need help.
            They are a blessing and my favorite charity.

        • BK says:

          I would love to know where you donate too. I have spent years walklng and fundraising for the ACS but am looking for a new foundation with the goals that you have mentioned above. Please email, me and thank you so much.

          • Lisa Bonchek Adams says:

            I have a fund set up at Memorial Sloan-Kettering Hospital that is earmarked for research on metastatic (stage IV) breast cancer, what I now have. Too little money goes to research into advanced disease. Metastatic disease is the only kind of breast cancer that kills. You can see the page here. Thank you for asking. Another good place is Metavivor.

        • christine says:

          The ACS does a lot more than fundraise – or did last I checked – and provides many life-changing services to patients throughout their cancer journey. The fact that they have funded at least 44 Noble Prize winners and do research for all cancers makes them a leader in the industry. While the main research might be to the specific cancer (whether that be metastatic as you speak of or childhood as they have so often come under fire for), the research they do leads to so many other outcomes for a wide variety of cancers and even other diseases!

          They also keep costs very low – so much of the things at their events are completely donated. Yes, you have to spend money to make money, but their fundraising costs go so much further in bringing awareness to the communities about local services and not simply in putting out “pink” items where a minuscule (if any!) goes to the actual cause.

          No, they aren’t perfect. Their big wigs probably could take a pay cut and still be satisfied and live better lives than most, but the organization and the people who do the work make the difference in so many lives they touch that the end justifies the means. And this coming from a former employee who was fired over the stupidity of her boss simply disagreeing with the way she did the job despite the positive outcomes she brought to the organization.

          • Deborah in Montana says:

            Charitynavigator.org – provides excellent information to the public at no charge.

            Here’s a link to their site regarding the American Cancer Society. I’m not impressed.

            http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=6495#.VQOGaylPnKY

            Please take a look at how the American Cancer Society stacks up against other charities. They received 2 out of 4 stars when rated. Take a look at their income and spending.
            ACS is not spending much odn research. Without research, there will never be a cure.

            FYI: Give me a break. When I lost my hair to chemotherapy, I had to PURCHASE head scarves from the ACS. No one gave them to me.

          • Tammy says:

            When I had breast cancer the ACS did nothing but tell me they were going too send things they never sent and tell me they were going too get me info on a local group, nope never did, I called and called, nothing. They offered to give me info on the phone that is available on line. They said I could stay in their hotel by the hospital IF I got too the hospital info desk before 7 am and could get a nurse or doctor on the phone to verify everything and if they had a opening that I would be the best person for! Seriously! I am about too have major surgery and they want me to do all that to MAYBE have a place to stay the night before or after surgery!

          • eileen carey says:

            Sadly that “foundation” is in bed with corps that make the VERY things i.e pesticides etc..that ACTUALLY CAUSE CANCERS.. so they start these “foundations” as HUGE tax ‘shelters” YET they are backed by ALL the garbage that causes these diseases…Wouldn’t it make MORE sense to PREVENT this sickness then to take chances in curing them with more poisons? sigh
            Good Luck in “believing” they truly care.

          • Lou Smith says:

            The ACS did nothing for me. I could not even stay in the lodge. It is all about knowing someone in the city the lodge is in. They told me I would have to get to the hospital at 7am, find a social worker (how do you find a social worker at 7am?) Have the social worker call the lodge to give all the info to get me on the waiting list. They do send me catalogs to buy wigs and mastecomy bras, etc. at very high prices. What awareness is not already known? WHere does the tens of billions of dollars go?

      • Holly Geier says:

        There is little to no money that goes to research from this questionable charity. They pray on the victims of the horrible disease. They have commercialized a disease that strikes so many women and men and glamorized it in toxic products. They only contribute 18% of the BILLIONS raised to pharmaceutical companies to research drugs that the victims/patients of breast cancer then have to pay for (chemo costs upwards of $500,000) when they enter their local cancer treatment centers. SGK does NO chemo, surgery, radiation, etc. They are an imaging and patient education organization only. They educate the need for mammograms, not the treatment of the disease. It is a sham. Donate to your local Cancer treatment center, like here in central IL it is the IL Cancer Care Center/Foundation. MD ANDERSON, SLOAN KETTERING, ST. JUDE (childhood cancers and adult treatments) are all viable organizations that do REAL research on this disease and all cancers. SGK and Nancy Brinker have prostituted Susan Komen (whom I met before she passed and still associate with her husband Stan). The propaganda is extensive within this organization. I could go on for days on how this organization has played on each victim to have hope that SGK is finding a cure, when all they are doing is taking your money. Off my soap box for now.

        • charles deal says:

          I dont understand why its all about breast cancer. Dont they know that there r other types of cancer that kill. I would rather see a foundation that collects money from donations for the cure of cancer period. My wife died from multiple myeloma which is a type of cancer. So why should all the money donated just go for a cure of breast cancer. I dont understand it. And i will not donate to komen.

          • Laura Voss says:

            I’m sorry you have lost your wife, my mom died of cancer (kidney) when I was a teenager and it stinks. Regarding your remark, I don’t think it IS all about breast cancer. I think the attention on it currently is because October is the month devoted to awareness of breast cancer. I think people need to donate to whatever type of cancer they feel called to donate to. I read this author’s article because I was just told Komen doesn’t really donate that much of the money to actual research or helping those with the incurable breast cancer she refers to. I am thankful for learning this, and will not give to them again. How sad.

          • Deborah in Montana says:

            We need to spread the word about the Komen Foundation and American Cancer Society.

            I agree that the focus on breast cancer is absurd. Breast Cancer is marketable whereas colon, rectal, prostate, lung, etc. cancer(s), are not marketable.

            In March 2014 I was diagnosed with a 2cm tumor in my left breast and a LCIS (Lobular Carcinoma In Situ) separately. In July the Swedish Center in Seattle found Atypia in my left breast. I have completed 3 months of chemotherapy, the typical 34 rounds of radiation and now I sit and wait.

            I learned about an organization/non-profit that is apparently legitimate and spends 100% of all donation on research for ALL cancers. Apparently they sell t-shirts and other things to finance the charity. I also believe that when there is a break through in one cancer, this may lead to break through’s in other cancers, including breast cancer. I wholly support all cancer research!

            Here it is: http://www.standup2cancer.org/where_the_money_goes

            P.S. I FEEL SORRY FOR MYSELF EVERY SINGLE DAY AND I AM NOT ASHAMED TO ADMIT IT. IF WANTING TO LIVE IS SELFISH, THEN SO BE IT! CANCER IS N.O.T. A GIFT! Geeeezuz!

          • Susanah says:

            Dear Charles, very sorry you lost your wife. I know this is too late but thought you might be interested in amazing progress towards MM I saw on an HBO show called Vice: Killing Cancer. If you don’t have HBO, the episodes are available on Amazon.

          • Michele says:

            I have esophageal cancer . My color is periwinkle

          • Dee says:

            Thank you for this. I have stage 4 matstic colon cancer and it’s practically hidden under the carpet, even though it’s one of the biggest killers and yet preventable, or even treatable if caught early. It pisses me off that all I see is pink ribbons, even at the Disney cancer center where I get my infusions! Tons of awareness and fundraising for 1 kind of cancer. We need not only research for all cancers but research on integrative treatments, which my oncologist just scoffs at. Even if big Pharma doesn’t make a nickel off of this it should be the health and hopefully curing of those effected that matter. This would make a lot of industries upset, as the toxins in so many products, as well as the food industry, stand to lose billions if poisins would be banned for our health. In the infusion center they offer sugared drinks, ie coke, fake juice, chips filled with preservatives, and sandwiches with processed meat, on bleached white bread, with a huge bowl of candy for snacking! All of these have been proven to be part of the cause of cancer and the spread of it! I take my own lunches to try and keep as healthy as possible. I feel as though they are incouraging continued bussiness so to speak. I realize we’ve come along way, but until hospitals, Drs and researchers truly work together for a cure it’s not going to happen.

      • Missy says:

        Feeling sorry for herself? Really? You apparently need a heart transplant.

        • alicia kenerley says:

          I live in pain everyday from my breast cancer treatment. It has ruined my life, my body and my finances. I cannot sleep on my right side I cannot lift with my right arm or ever have blood pressure taken or an IV on my right side. But of course my left arm is messed up because the medical industry administered chemo into my arm tissue without properly inserting the IV. I feel sorry for anyone who has been through this modern day alchemy which includes feeling sorry for me. The judgmental man who made that statement about how much feeling sorry for yourself helps is an idiot! No one said it helps it is just a natural human emotion to feel compassion for a hurting individual, even if that individual is myself. Maybe karma will show him one day just what it is really like, how dare anyone criticize a person for hurting? I guarantee you it wouldn’t bother me one little bit for that jerk to feel every bit of the level of pain I endure even 100 times worse than me, if that is even possible! He must be a troll?

        • Debra Lynn says:

          I don’t ever want to sound harsh, but I do think feeling sorry for yourself and being proud of it is a very sad way to live. I wish she had a reply option on her post.

          • laurie says:

            She has a right to her feelings whatever they are why criticize her? Maybe you should walk in her shoes and your eyes would open.

        • Jessica Hebble says:

          Agree, we all feel sorry for situation,family,and want restored the ego that diminishes as you begin to crumble. Then u realize I can’t give in to this no matter what I must survive!!. I too have been dealing with breast cancer and estrogen cancer, whatever ribbon color is for that..the ACS provided free massages which pampered me until one day broke had asked for food voucher help, already biting down just to ask…then the lady denied me BC I refused chemo.I didn’t know I had to choose more sickness to get help..well this is my body and choose not to until they give me a reason why..then they switched it to take a pill…well my stomach says no drugs now, all the drugs they pumped me with to remove breasts helped but when it wore off, the side effects and lack of all the home meds helping with none of the pains.the Dr acts like your not to complain and suck it up.cut your muscular chest off and see how it feels compared to the ” fat” men think breasts are..its not just a lypo procedure.that year nobody understood what I was going through. Oh, u look normal, u are fine..really…I didn’t know that cancer is so noticeable when most ppl don’t know they have it early..the docs SD I had no cancer that year through MRI,CT SCAN, and mamo.I had two kinds unseen.so for ppl like me, why have I not been supported or properly cared for, why have they not PET SCAN to see if I have more other places.my blood stays A1, but it was then. By the way new CT SCAN from ER showed spots on liver, kidney,and uterus full..I guarantee mine started in uterus where I’ve had a lot of issues with.nobody still has scanned me for any cancer.3 hysterectomy drs signed me in to get this removed but then they left practice. Two yrs later same outcomes.money that I wanna raise will be dedicated to those alone, fighting that can’t get anyone to help like prepared meals,massages,supplies,bed cushions,nourishing oils,etc, if ever get this going really want to house alone cancer( any kind) battlers..yes and for researching cures..reading all this, reminds me not of my fight now but how you feel when diagnosed..the first thing I wanted was to donate my hair to Locks of Love before it fall out, then seen how the organizer was investigated for wigs, hair samples, and where some hair was going…my hair was for cancer patients, not for weave!!!…I think greed worked over these organizations and they forgot what the true intentions of donations for cure means…
          You can’t tell ppl they are cancer free when they are not! You can’t tell ppl they have to choose chemo toxins if you tell them they are cancer free!you can’t tell ppl they will survive by adding a cancer to you,then to see all these ppl getting reoccurances. I knew I had it coming when carried cells three years undetected cervically, that was 24 yrs ago. Returned in 2013 cervically detected, so all the obgyn spots I had for the ongoing issues never showed again, one month later breast cancer, two months later estrogen..js..now to wait longer for a mass from 2 yrs ago…it has to go so I can go on!!!!100,000 cells grow a day…

      • Captain Julia Johnson says:

        Dave – I have read your comments several times. I do not completely understand some of your statements. I am a retired Registered Nurse. I volunteer for the American Red Cross at Walter Reed National Military Medical Center (Volunteer Service to the Armed Forces). Throughout my career, I have worked with patients who had to endure cancer treatments, and the terrible side effects from drugs, and other forms of treatment. I have worked with children, young adults, and older adults. I can never recall a time when any of my patients “felt sorry for themselves”. If patients want to feel “sorry for themselves”, I firmly believe that they have the right to do so.
        You wrote, “I bet breast cancer is terrible”; you are correct with this statement. All cancers are terrible! Are you familiar with the statement “walk a mile in their shoes?
        You wrote, “Remember, for every woman who dies of breast cancer 6 die of heart disease”. I am not sure what the point was in mentioning this. Do you believe that patient’s suffering from heart disease feel sorry for themselves? Do they have a right to do so? My mom died from heart disease. She truly suffered for the last two years of her life while here on this earth. There were days when I wished she could have felt sorry for herself, but I think that she was too sick to do so. Now, I have to watch my family grieve. I never heard, or saw my dad grieve in the manner that he does now. Since my mom died, (they were married for 63 years) I have seen my dad crying, and I have heard his voice break whenever he speaks about mom. I have never heard his voice break before when he spoke of members of his family (his parents, and siblings) dying, and I never saw him crying. Now as previously mentioned, I frequently hear a break in his voice, and see him crying whenever he talks about mom. I know my dad’s pain. Do you think that he is feeling sorry for himself?

        • Connie Mullins says:

          I have just finished reading this article and am very sorry you feel that way. I am participating in a Susan G. Koman fundriaser for the first time. I am very excited. A local business is holding a large yard sale to raise money for their employees to walk he entire 60 mile, three day event. I made over 50 pink crafts to raise money to assist in this event. I ran into a lady at a local craft store who told me about the event. I sprang into action. I am a cancer survivor, but unfortunately had to watch my grandmother go through several surgeries for breast cancer. (They did not do radicals in that town or a that time.) I feel she might have lived longer is she could had had a radical. I feel very lucky to assist in this event. I think if my grandmother with each stitch and know she is happier. She always told me that if yo’re given a talent, be sure to give it back or you will lose it. I plan on making “pink” as long as I am needed!!! (702) 717-4635

          • Tanktronic says:

            Connie,

            If you want to find a CURE, and not pay for Komen’s overhead, give your energy and your money to the Breast Cancer Research foundation. For every dollar donated, BCRF spends $0.88 researching a cure. Komen spends $0.11. End the disease. Komen is a lie using your emotions to confuse the truth that they are a marketing firm.
            https://youtu.be/qa4pzXv5QA0

        • you are a jerk just shut up shit happens.

      • J arnold says:

        To Dave….how dare you say this woman was feeling sorry for herself !! You clearly have NO idea what a woman goes through with this kind of thing…I am just now reading her letters but wish I had come across it sooner. SGK spends too much money on things like cards, calendars, labels and for a few years a little cheap “Christmas” ornament that was made in China !! A country that does not believe in Christmas or anything that most Americans hold dear. When I posted that fact on the SGK Facebook page a couple years ago, it was taken down immediately !!! So that speaks for itself. I wish I had read Lisa’s articles before now because sadly she has passed away.

      • Liz says:

        Dave,

        Being a Stage IIIC breast cancer survivor (when actually the doctors had written me off) I have been through things unimaginable and I don’t see were the writer is feeling sorry for herself. If you knew anything about survivors you would know is the last thing we do is feel sorry for ourselves. If that were the case we would not be here!!!!! It’s attitude, love and a great support team that gets you through. I walk around with 1-1/2 breast, more scars than I could even explain to you, lost my hair, went through chemo, surgeries, radiation and I know what she is saying I may get dressed up and do my hair and makeup, but what I see in that mirror is only part of the woman I started with. I’m okay with that cause I’m alive and do you know why I’m still alive because of idiots like you who make me write these things. My motto is I’m not going anywhere cause I still have too many people to piss off. I hope the comment is doing that for you. Try having your manhood taken away and then come tell me about feeling whole!!!!! also everyone is not aware. Do you know some of the simplest signs I ignored because I had no ideal they were signs of breast cancer. I really could go on, but why you know it all already. I hope you never lose someone from any kind of cancer I have had 2 my dad and son cause you know what it SUCKS!!!!!!

        • Cat says:

          Liz — I was with you up until you wished cancer on his friends/loved ones. It’s not their fault he’s a jerk. Besides, given his lack of empathy he probably wouldn’t care unless it was him who was suffering. Leave the innocent people out of this.

          • Liz says:

            I wasn’t wishing cancer on his family.l don’t wish that on anyone. I just hope he never has to deal with this disease. Sorry if it came off that way. It just upsets me that people think we all sit around and say oh woa is me cause we don’t want to use the energy for that we are to busy fighting the fight and making sure our family knows you’re up for the fight and are in it to beat it. Cause if you sit around having pity parties it gets you no where. I know that for a fact. I have watched too many people do that and unfortunately lost the battle. Is it easy no, but you do what you have to do.

        • Jrenee says:

          Liz, about a week ago I was diagnosed with invasive ductal carcinoma. I hope for the best since it is small, but still have tests etc before any surgery, but also know the worst can happen since my sister died from metastatic breast cancer just 5 months ago.

          I just wanted to thank you for the line “Not going anywhere because I have too many people to piss off.” My emotions have been all over the place lately. I actually laughed out loud for the first time in a week so thanks.

          I’m right with you with the anger and though I’m fortunate I have no pain…yet…having even a lumpectomy is so scary. Seems the idea of “breast cancer survivor” is pushed as some kind of wonderful club and I should be happy that with treatment i have a great chance of living another 5-10-15-20 years or whatever. There is nothing good about this. There is less horrible.

      • kduke says:

        Wow, what an arrogant asshole you are.

        Your parents must be so proud.

      • CRear says:

        When I started reading Lisa B Adams site, I couldn’t agree more. I do not believe a cure will occur anytime soon. As a breast cancer survivor, I favor donations going directly to the patient. The cost is surreal. The treatment is surreal. How many of you had the Red Devil Chemo treatment? Ugh…I still can’t stomach thinking of it a year later. My sister who had breast cancer 10 years before me received the same medicine! In the medical/science research world this is impossible. All this supposed funding and we still receive the meds that make us so sick. Do I feel sorry for myself? Hell no! Just put the donations to where are most needed. Give me a better treatment plan. Give me the peace to know I can financially get through this when I have so much else to worry about.
        I’m not sure where this “dave” has determined “he” has the right to question the opinion of anyone, let alone a breast cancer survivor’s opinion about a well known breast cancer organization. Heart disease, diabetes, ovarian cancer, violence- no one wants it in their lives, let alone cause their death. “dave”, it happens. Let’s make the life of anyone hurting or suffering a little less painful and/or stressful in whatever way we can.

      • Beth says:

        Dave they should focus less on a cure and more on prevention! For instance diet! Diet that sure as hell would not include KFC and Mike’s Hard Lemonade! Most of the money SGK raises goes to Billion Dollar Drug companies who make Billions of dollars treating cancer!
        What an ass you are for attacking the women with metastatic cancer! She has every right to feel “sorry for her self” as you put it. Sharing her story is therapeutic, and you have no right….

      • Shocka says:

        Wow Dave – you are a complete D$#K!

      • cliff craft says:

        not a very nice person there dave, I help out on bicycle rides, walks, runs and such with the local ham radio clubs, and have for over 10 years. last summer on the way back from latham ks, a rest stop for the MS100 ride, I got to thinking, here I am helping out with a potentially deadly disease charity, when I have some myself. I have diabetes, congestive heart failure, Breast cancer (STAGE4) and now lymphedema all waiting to do me in. Yes, the treatments, tamoxifen and exgiva are painful, but I still go on working and helping those I can.

      • Lisa says:

        This comment is old but I must reply. You bet cancer is terrible? And you say the author feels sorry for herself and that she was dumb for wanting less money to go to a cure. Well…Cancer is terrible and money should go to the patients bills, food family children etc. Money should not go to awareness and as far as towards a cure…well the money should go to prevention. Fix our poisoned food supply and rem9ve chemicals from our Beaty products water oth ingredients air etc
        Stop promoting fat as beautiful and let’s get real! Susan G KOMEN is a billion dollars scam . While cancer patients are dying from lack of treatment or with debt for their family…SKG is raking in the cash at their expense.

      • Lisa says:

        You bet cancer is terrible? And you say the author feels sorry for herself and that she was dumb for wanting less money to go to a cure. Well…Cancer is terrible and money should go to the patients bills, food family children etc. Money should not go to awareness and as far as towards a cure…well the money should go to prevention. Fix our poisoned food supply and remove chemicals from our Beauty products water oth ingredients air etc
        Stop promoting fat as beautiful and let’s get real! Susan G KOMEN is a billion dollars scam . While cancer patients are dying from lack of treatment or with debt for their family…SKG is raking in the cash at their expense.

      • Lou Smith says:

        Guess how much the American Cancer Society pays executives? One gets over $400,000. plus benifits.

      • Shannon says:

        Well said.

    • Leslie says:

      I agree with you and thank you! I thought I was the only one who felt this organization is a hoax! I lost my mom in 2008 to breast cancer and my brother and I receive donation forms addressed to my mom!!! This is pathetic! Where is all of their money going??? I’ll tell you…to the staff and to Nancy Brinker!!!

    • Ashley says:

      I do thermography – early detection and prevention of cancer without the radiation and its non invasive and can find cancer early. Call me if you have any questions 561-703-2022.

      • Deborah in Montana says:

        I wish Lisa were here…, and could comment on the comments! With no concern about what anyone thinks. I always wondered if Lisa censored her own comments as they did feel sterile at times.

        Many of our comments are less filtered, less politically correct and to be honest, more real. We no longer tip toe seeking approval or fear of writing what we think. That’s a good thing.

        For those thinking that “Thermography” can “provent” or detect cancer early, you’re wrong. A mammogram can detect cancer early (size of a pea or smaller) and an MRI (no radiation at all) can detect cancer at it’s earliest. Please stop spreading false information to women. This information is the reason women do not get mammograms.

        Nothing can prevent breast cancer. That is entirely false! Only and MRI (no health risk) or mammogram can DETECT cancer at it’s earliest and BEFORE it’s life threatening. Shame on those who spread false information.

        Deborah

        • Eric says:

          But what about all those who swear hempoil can cure everything from AIDS to hangnails… Those people piss me off to no end. I hate to say it but Chris Rock was right there is no money in the cure. The best we can hope for is super early detection and hopefully the radiation and chemotherapy get better at shrinking the cancer cells faster with less side effects.

  • jo miller says:

    I am sitting here, completely blown away. I sit here applauding your courage. I sit here, full of respect for the person you are – I believe you have always been this person, with the softer bits having been honed by life’s tools and circumstances ( and not always in a gentle way ). not all of us are called to this profound shifting of the shape of our lives.

    there is an incredible amount of information in this piece. This is finely written, a thoughtful balance between some very timeless edges.

    I am impressed by the grace you demonstate,

    I am shaken by the gripping nature of this tale. I would like to see this published in an international forum.

    I appreciate your leadership and commitment.
    I am also aware of your responsibilities at home, so will not ask for more. I believe that you are doing a fine job all around ~ love your smile and sense of humour 🙂

    Thank you.

  • JoAnn Kirk says:

    I so much agree with everything you said above. That gun is the worst of the worst.

    I became disillusioned with Komen years ago when I read how much money her sister made as CEO of the foundation (over $600,000) and that only 24% of the money raised actually goes to research of any kind. Most of the money goes to salaries, marketing, etc. Disgraceful.

    • Denise Chynoweth says:

      Actually only 1.1% goes towards metastatic research. Which is what Susan Komen died from. 1.1%. If that doesn’t make you sick then noting will. Komen is nothing but a cash cow and Nancy Brinker and her execs are laughing their way to the bank.

  • Laura Lump says:

    Because of your past (critical) pieces, I was also not surprised by their recent actions. Thank you for being such an excellent educator, Lisa.

  • If you want to read more about Komen’s financials, Alicia Staley (@stales) has a great blogpost “Lawsuits for the Cure” here: http://community.wegohealth.com/profiles/blogs/lawsuits-for-the-cure

  • Deborah Blum says:

    An incredible post, Lisa. Smart, brave, honest and full of decency and compassion. Glad you wrote it and glad I read it.

  • Mary Lou says:

    Lisa – I’m so touched by your writing and appreciate the context and your history with the Komen Foundation – it’s refreshing to hear a calm voice of reason weigh in on this debate from someone so obviously qualified to give it. Thank You.

  • Brenna says:

    Excellent post. I have felt this way about this entire ‘pink culture’ for quite a while. My donations go to the American Cancer Society.

  • DS says:

    Just to clarify something, the article linked to regarding the “pink gun” has the headline, “Susan G. Komen Foundation Says It Is Not Connected To Pink ‘Hope’ Handgun” (apparently article was updated since the time it was first posted).

    Komen says it did not authorize the gun and stated, “We do not have partnerships with any firearms manufacturer. Nor does our Seattle Affiliate receive donations from this manufacturer.”

    In addition, the gun maker’s description of the gun also misspells the foundation’s name as “Koman.”

    • Anonymous says:

      Then one would imagine, considering the organization has no problem filing suit against other non-profits using the term “for the cure”, that they would also be paying people to look out for unaffiliated products bearing their name (whether they are misspelled or not) to sue. That seems more damaging to their brand name and corporate revenue then other organizations raising funds/hosting events and raising awareness for countless other worthwhile causes. It makes you think about their priorities.

  • Tonia Scoville says:

    When my friend was diagnosed with cancer, I thought about buying the pink trinkets, but couldn’t figure out how that would help her. I offered to shave my head in solidarity, I took care of her dogs, I gave her your blog information so she would have someone to talk to who could speak from experience. I still don’t think much of the pink trinkets, and I grow tired of how politics is being used to determine something as basic as who lives and who dies.

  • My first reaction to the Planned Parenthood issue was, why is the Komen foundation donating in the first place? Their focus should be using my donation dollars for curing cancer. Both organizations are important, but Komen For the Cure is losing focus on their mission.

    Then I read your blog. It’s hard to believe that a woman would invest so much time and effort for her sister, only to lose sight of the goal over the years. I suppose it’s another story of power corrupting someone’s values. I feel sorry for her, because she could do so much more to help you and the others in this tragic fight. You did the right thing, and you have every right to feel the way you do. I hope this latest debacle will start changing the Komen organization, but I doubt it.

    • Toni Vitanza says:

      Patrick, Komen gave money to Planned Parenthood to help fund mammograms for women who use Planned Parenthood for health care services (and they are legion). So THAT’S why Komen gave money to Planned Parenthood. A woman might go to PP for health care/yearly well-woman exam and would be found to need a mammogram — either because they needed a regular mammogram or because there was a problem — and then the people at PP would give the woman a referral to a nearby facility with mammogram equipment and Komen would pay. So, yeah, there IS a reason for Komen to give money to Planned Parenthood — because Planned Parenthood is a MAJOR health care provider for women in this country.

      • Liz says:

        Planned parenthoods “mammograms” make up a minuscule part of their organization. The vast majority of planned parenthood efforts focus on abortion and It should be common knowledge now that abortion significantly raises breast cancer risk… so why does Komen contribute to Planned parenthood when there are plenty of other venues that offer free or low cost mammograms and do not contribute to the known causes of breast cancer!!? P.S. Sweden is now banning routine mamograms citing the routine exposure to radiation actually contributes to the development of breast cancer. Younger women with dense breast tissue is like finding a cancer snowflake in a blizzard one radiologist explained. He continued with the fact that younger women need to be aware of the radiation exposure for very little benefit for dense breast tissue – and very possibly significantly raising their risk.

        • Mary says:

          Before stating that the “vast majority” of planned parenthood efforts focus on abortion you should check your facts. The fact is only 3% of funds focus on abortion. Planned Parenthood helps women with many health care needs. And those needs include much needed mammograms.

  • Becky Sain says:

    I started looking into things more closely when you were pointing them out regarding Komen. I’m glad you did — I think these organizations start out so noble and worthy and then become so “big business” that it all becomes cloudy and sad.
    Thank you again my dear friend for keeping me informed.

  • Tana Butler says:

    Lisa:

    This is the best thing I’ve ever read from you, and the best thing I’ve ever read from ANYONE on the topic.

    I am just basking in relief that someone with your insight, your acumen, your huge heart, your love of life, and your ability to be honest and real about the things you’ve endured—that YOU have addressed this so beautifully.

    You are permanently in my prayers—the prayers of a woman without a denomination, a woman without an official religion.

    Except that you and I share an obvious love for zany little children and babies who say things that keep us awake and laughing.

    Long live laughter, long live awareness—true awareness that pink handguns are a despicable use of charity.

    Sending love from 95073!

  • Michael says:

    This is spectacular, Lisa. Shared.

  • Judith Mary says:

    As a woman who has a cancer other than breast cancer, I get very irritated by all the pink this and pink that..all cancers are important and deserve a search for a cure..Lisa’s description of how cancer makes you feel is right on..those feelings stay with you and your body is forever affected!

  • Morgain says:

    Hi Lisa,

    Reading your story has made my heart well up again for my friend, Claudia.

    Only someone who’s been through visits at City Of Hope or seeing a nurse in a Chemo suit can really understand how awful it is. It’s a pain that over the years has diminished to a dull ache, but it’s always there. Like scar tissue that itches. It’s best to leave it alone.

    At first, I was so excited when Claudia told me that there was a group that brought awareness to breast cancer and helping women, but then got irritated too with all of the pink shit they were throwing at us.

    How does a crappy pink plastic thing made in China help anyone? PBS doesn’t advertise like that. The Sierra Club doesn’t advertise like that. Only Disney advertises as much. A pink coffee mug will save you. A pink tee shirt made by a child in Bangladesh with make you feel better.

    Anyway, thank you for showing the truth and unmasking the pink beast.

    Please read my story about Claudia Miele. She was a kick-ass friend, a mother who loved her little boy, a good sister and a woman who didn’t take shit from anyone. She taught me how to take care of myself.

    She was a young woman who got breast cancer and saved my life before she died.

    Morgain McGovern
    morgainm.wordpress.com

  • emily says:

    This was a great insight. I wanted to share with you an organization called Spa4ThePink- its. Non profit based out of Colorado and I recently got to meet annd hear the founder, Julie Bach. She’s on her way to doing amazing things for cancer patients and survivors and helping them reconnect with their bodies and provide a much needed touch and care. They have a program where you donate a box of products for them to give to a patient and you get one for a friend or family member (or whoever). Really amazing plans. Thank you for sharing with us.

  • Mary F says:

    Excellent. Powerful.

  • Shelley says:

    What a powerful article! This ought to go to The New York Times!

  • That was an excellent, excellent piece Lisa. I loved it.

    I guess that pink knitting yarn probably was’t a great gift for Paige…

    I have to admit that even standing in the craft store looking at displays of yarn with Susan G. Komen on it I thought to myself “is there anything this woman doesn’t have her name on anymore?” Her name is everywhere, and it does make one wonder – I know I did – if the corner had not been turned from do-gooder to corporate mogul.

    Thanks for opening up everyone’s eyes.

    P.S. Loved the gun. Geesh.

  • dona says:

    thank you for writing this and for putting words around what i’ve felt but i’ve been hesitant to say out loud for such a very long time.

  • Ann says:

    So very well said and done, Lisa.

  • OK, the gun is awful, but I lost any shred of respect I might have had for Komen with their fundraising PERFUME. Because, yeah, just what people with chemical injury and/or heightened sensitivity from chemo need: toxic fragrance chemicals.

    I learned 15 or 20 years ago about all the corporate backing of BCAM (when it was called that, and before the pink ribbons). How prevention always focuses on individual choices, like diet and exercise, and how the vast, accumulating evidence of environmental causes for breast cancer were carefully ignored because the industries that make them were on the BCAM board.

    Corporations have been getting their bread buttered on both sides with breast cancer: G.E. is an example: they make the chemicals that cause it, then they make the medical equipment used in diagnosis (scanning equipment), and then they sit on the boards of the breast cancer nonprofit corporations, “raising awareness.”

    I guess I’ve gotten so cynical that I’m surprised that people are surprised by this latest move. I saw a comment on an article about this lately that I loved. It was translating Komen Foundation’s statement: “We’re sorry we brought attention to the issue by bringing attention to the issue. We apologize to the money. Please bring back the money.”

  • Jane King says:

    I agree with everything you wrote. I’ve never given money to Komen.

    However, they DID raise awareness initially about breast cancer, and for that we must be grateful.

    I wish Parkinsons, heart disease and Alzheimers had the same game plan that Komen did at the beginning…

  • Tom Gilliam says:

    Excellent perspective – I was wondering how you felt in detail about the whole situation because I’ve always felt that they have a completely skewed version of the world. To me, it’s a marketing machine and nothing else, and that’s what I despise.

  • Thank you so much for your insight! I watched Nancy Brinker’s contentious interview with Andrea Mitchell on MSNBC. While watching all that I could think was “this woman has sold her soul to the devil”.

  • Rebecca says:

    I think I remember the tv show “Survivor” supporting Komen at some point. I could be wrong. Anyway thank you for this. I have not followed all of the Komen drama through the ages. I usually support the “Relay for Life” races by the American Cancer Society. Your blog post is very educational and informative. I will definitely be sharing on FB & Twitter.

  • Amy says:

    Lisa,

    Thanks for sharing your experience as a cancer survivor and as a prudent donor to charities.

    Your courage has not only helped you through life’s challenges but is now also giving many others useful insights.

    Thank you and best wishes!

  • Steve says:

    At least the foundation ended its support of Planned Parenthood. Bravo! I do get annoyed at all these left wing women who cling fanatically to their devotion to abortion on demand. I do notice that the author of the article watches MSNBC which is nothing more than a propaganda arm of the pro-abortion lobby – and will naturally be critical of organizations like Kommen.

    • Brenna says:

      Steve, only 3% of PP’s services are for abortions. The rest are women’s health services, HIV/STD testing, contraception and cancer screening. Your characterization of ‘left wing women who cling fanatically to their devotion to abortion on demand’ is both insulting and grossly misinformed. I’d venture to say you don’t know any women who depend on Planned Parenthood as their sole source of health care. If this is what annoys you in life, then that is a very sad life indeed.

      • Steve says:

        Well – the government can no longer afford to be in the ‘reproductive choices’ business anyway. Planned Parenthood should be completely defunded.

        • Lauren says:

          To say this is to say “I don’t care if economically disadvantaged women die.”

        • Dani says:

          Don’t forget that Planned Parenthood also serves disadvantaged men as well, offering low cost screening for things like testicular cancer and UTI’s.

    • Toni Vitanza says:

      Steve, Planned Parenthood has prevented more abortions than all the “pro-life” groups put TOGETHER.

  • Sharon Martinelli says:

    Lisa, It is as though you crawled into my head and took the lines that I would have written if I had taken the time to do as you so thoughtfully have done. The pinkwashing has taken it’s toll on me as well, long before this latest incident. My friends and I dread October – some of us are breast cancer but some have suffered cancers on other parts of their body and cannot understand why there is such a campaign for breast and not for bladder, mouth, uterine, cervical, stomach and so on. I feel like we are desensitizing people by making everything Barbie Pink and discounting all the others who feel very ignored. A while back I walked in the walk and remember going up to get my shirt and listened to a woman get pissed off that she could not get a pink one unless she had cancer. I wanted to throw up. Cancer is not pretty – it is never over. I want money raised but I am so sick of the wasted “awareness” dollars instead of the “why the hell is it happening in the first place” dollars.
    anyway, your post was wonderful and I thank you and am in alignment with you 100%.

    • Mary Hoyt says:

      Thank you for this long overdue post. I, too, cringe every October when the “Pink march” begins–for the past 2 years I have written the local paper that there are more cancers than breast cancer, and ALL should be addressed.
      I was diagnosed with breast cancer in December 1998, treated with lumpectomy, 7 1/2 weeks radiation and Tamo. In 2005 it returned, resulting in bilateral mastectomies. In 2009 I had a radical nephrectomy for renal cell cancer.
      Your post is indeed wonderful, and I thank you.
      I would like to see the pink go away!

  • Colleen Lindsay says:

    I dunno. I think this pink Darth Vader head (which I have sitting on my desk at work) may be the worst Komen-branded thing I’ve ever seen.

    I also once saw a pink Komen-branded bulldozer at a logging show. I shit you not.

  • AmyG35 says:

    This is such a personal and level-headed response. I am been amazingly blessed in that I have not had to deal with cancer directly in my immediate family, (though have suffered other losses and have many friends whose families have been affected — don’t we all these days?). So, I admit to not knowing much about the Komen foundation other than their obvious advertising. The past few days have been enlightening for me. Many of the pink items are obnoxious (and I didn’t realize just how many there are!!), and the gun put me totally off! I have always supported the American Cancer Society and hope they are using their funds wisely. Any thoughts on this? Also, there is a Gilda’s Club near where I live (named after Gilda Radner) that offers support to women with various cancers particular to women. Are you familiar with their work? I would support them as well. Thank you for sharing your thoughts on this topic; it was very helpful.

  • Mary says:

    Lisa, thank you for sharing your story. This is a lovely post.

    Brenna, PP likes to say that only 3% of their services are for abortions, but since they count each service separately, the actually abortion rate is nearly 10% . They receive more than 900.00 tax dollars for each abortion. Almost half a billion tax dollars last year. They do not perform any mammograms.

    PP and Brinkman feed off greed, they both disgust me.

    • Steve says:

      Excellent point Mary. You won’t see any pro-abortionists acknowledge this. I also question how effective their ‘reproductive services’ have been. Our country is awash in both teenage pregnancies and abortions. Seems like plenty of people are making bad choices. What’s more – government funding of this nonsense is no longer feasible as we are completely broke. The lefties that post here don’t understand any of this. They just want to maintain a failed system as long as it continues to protect their holy right to continue killing the unborn.

      • Jill says:

        Spoken like a true man.

        • Mike says:

          I don’t think that’s fair to true men.

          • Tana says:

            I think it’s fair to say that men who declare that they have any business in a woman’s reproductive rights, is not a fully developed man. You have no dominion over my womb. And your opinion is nothing I care about.

            “They just want to maintain a failed system as long as it continues to protect their holy right to continue killing the unborn.”

            I got yer failed system right HERE:

            The NRA’s refusal to put any sane limits on the limiting of weaponry and MARKETING RIFLES FOR CHILDREN is tantamount to the endorsement and sponsorship of children performing postpartum do-it-yourself abortions ON THEMSELVES with their Christmas and birthday presents.

            Harsh? Sure, and true.

  • Phyllis says:

    Thanks, Lisa, for your honest and articulate description of your experience with the SGK Fdtn. I lived in Dallas from 1985 -1991 and I remember thinking how “Texan” SGK was in its approach when it first came to my attention back then. Big, seemingly for a good cause, but with the underlying conservatism and hubris that informs so much of the philanthropy there. Even back then there was something about them that made me uneasy.

    Funny, though, I feel the same way about the Gates Fdtn.

  • Steve says:

    Below is a good article by John Hayward on the ‘Planned Parenthood’ brigade:

    Susan G. Komen versus the morality parasites
    The death of distinction is the end of reason.
    by John Hayward
    02/03/2012
    151
    Comments

    After the Susan G. Komen Foundation announced changes to its grant criteria that would jeopardize its funding of Planned Parenthood, full-on hysteria erupted among the Left. Nothing less than an organized effort to destroy the Komen Foundation was hastily organized. Not a word of appreciation for the billions of dollars Komen has directed to the fight against breast cancer was spoken. Their continued funding of Planned Parenthood was, quite simply, compulsory and not open to review, even though their stated reason for re-considering their funding pertained to ongoing Congressional investigation of Planned Parenthood.

    This exact same ideological battle was fought during the last “government shutdown” crisis. The Democrat Party declared itself willing to shut down the entire federal government to protect compulsory taxpayer funding of Planned Parenthood. The conscience and “choices” of individual taxpayers were completely irrelevant, as were the actual activities of Planned Parenthood.

    Planned Parenthood funding was the sole impediment to a budget deal, in the penultimate hours of the shutdown crisis. Here are some quotes from an April 18, 2011 ABC News report:

    “It’s an outrage to shut down the government over an extreme proposal that would deny millions of women Pap tests, breast cancer screenings and birth control,” said Planned Parenthood president Cecile Richards.

    Richards said the company’s 800 clinics serve an estimated 3 million low-income women every year.

    Democrats say Republicans are on an extremist crusade to put a “bulls eye on women in America” and undermine essential preventive health care services for millions of low-income women that rely on Title X-funded clinics every day.

    “We are not – we are not! – bending on women’s health,” Senate Majority Leader Harry Reid said today.

    “This has no impact on the budget. It has no impact on the deficit or the debt,” said Maryland Sen. Barbara Mikulski. “Where we will not go is eliminating the health care for women. Make no mistake, this entire debate has involved throwing women and children under the bus.”

    Mikulski and 40 fellow Senate Democrats have vowed to filibuster any budget deal that includes cuts to Title X or prohibits funds to Planned Parenthood.

    Remember, the Democrat Party was ready to cut off military payroll checks to protect that compulsory Planned Parenthood funding. Unique among private organizations in the United States, you have no choice but to fund Planned Parenthood. Private organizations that provide them with direct funding are not allowed to reconsider that decision, for any reason.

    All of this is done in the name of Planned Parenthood’s breast cancer screenings, even though it does not perform mammograms. If the Komen Foundation had pushed ahead with cutting all funds to Planned Parenthood, it would not have banked its savings or returned them to donors – it would have diverted the money to other women’s health organizations, including those that do perform mammograms. But they were not permitted to make this decision.

    What we have here is the paramount example of a phenomenon common on the Left: parasitic morality. The health services Planned Parenthood performs with respect to breast cancer become an absolute moral imperative that shields all of its other activities, including abortion services that many people find deeply objectionable (to put it mildly.) If you question any aspect of PP’s activities, you want women to die. Many of PP’s most ardent defenders will use exactly those words.

    Parasitic morality is an important building block of Big Government, which in turn is very nourishing for organizations like Planned Parenthood. We hear such formulations all the time. If you oppose a tax increase, you want poor people to die. If you demand government spending cuts, you must want to yank cops off the street, and doctors out of emergency rooms. Challenge Big Government in any way, and you are clearly a hateful enemy of whatever virtuous dependency group it chooses to hide behind.

    There are many ways people and organizations concerned about breast cancer can battle it more effectively, and more in accordance with their own moral standards, without pouring money into the coffers of a massive abortion provider. Writing at Life News, Dr. Gerard Nadal has one such suggestion:

    Planned Parenthood does not perform mammograms, but only manual palpations. That’s substandard for low-income women, especially Black women, whose incidence of breast cancer is frightfully higher than any other demographic.

    Beginning TODAY Komen needs to announce a new initiative for purchasing mammogram machines for urban centers with high density, low-income women populations. Then they need to invite corporate America to join in the effort. What does corporate America want to do, fund Planned Parenthood squeezing breasts, or mammograms for women who are effectively shut out of the system? It’s really that simple.

    Komen is the largest breast cancer foundation in the world. They should stand for excellence in women’s health care, especially for the poorest and most breast cancer-affected women among us. A mammogram machine initiative does just that.

    That sounds like a great idea. Why don’t we run it past some of the people shrieking that any cut to Planned Parenthood funding is a knife plunged into the breasts of women everywhere, and see what they think? We could easily screen their replies for moral parasites.

  • Julie says:

    Steve, why are you here? The crux of the entire Komen/PP issue was that a health care charity shouldn’t take a “side” in a political issue. I think you’ve made their point.

  • Mike says:

    I don’t generally contribute to to the Susan B.Komen Foundation (I did contribute a nominal amount to a friend’s team who participated in last year’s 5K walk in NYC) because I prefer giving directly to the research and treatment organizations like the Dana-Farber Cancer Institute simply because it avoids having a portion of my contribution used to pay the expenses of the “middle man” – the organization that merely solicits funds and redistributes those funds rather than doing the actual research or treatment. That applies not just to the SBKF, but to any number of other similar charitable organizations involved in any number of other causes, as well.

    Which I why I also give to Planned Parenthood – again, not a huge amount but I did make a sizable (for me) additional donation this past week, strictly to object to the kind of misinformation we see, unfortunately, in the posts slamming PP here – the same misinformation behind the pressure on SBKF to stop funding PP’s cancer detection programs (not that SBKF’s decision to bow to that pressure should be blamed on anyone other than SBKF, themselves). The fact is that PP spends 3% of it’s budget on abortion services, not the 10% claimed here or the 90% Senator Kyle insisted they spend before his staff admitted he “misspoke” – and not a cent of that is taxpayer money. In backing down from their position, SBKF has acknowledged the current investigation of PP is political, not criminal. Too bad they didn’t think about that before they announced they were cutting off the funding not that it’s hurt PLanned Parenthood at all – they had actually raised more money as a result of the brouhaha than SBKF was giving them under its grants.

    But folks – and Health Advocates in particular – please (regardless of the cause) consider giving directly to the organizations dealing with the treatment of, or research into, the cause rather than to the folks who amass power and contribute little, by deciding to whom they will give a portion of the money you give to them. If you’re even considering giving to a middle man, find out to whom they plan on giving your money and give directly. If the middle man consumes a third of the money it raises for overhead, giving directly increases the dollars reaching the folks actually doing the work by 50%.

    And, fer Pete’s sake, stop giving to the SBKF before they start suing everyone who uses the color pink….

    • AnneMarie says:

      Yes, Mike! The Middle Man…. How is it that people don’t grasp the concept? Besides the middle man taking their “cut” for very high salaries, golden parachutes, travel expenses to go sit in interview chairs and I’m fairly sure Brinker & Co are not in the back of the plane and that’s if they even fly commercial, grant applications can take a year before the research team sees a dime. When you give your money to Dana Farber (or another cancer hospital) or directly to a facility that serves women….. the money is being used immediately and for the purpose that speaks to what is important to you. I don’t know how I missed this post and the entire conversation……

  • Sydney Navarre says:

    Wonderfully and poignantly written.

  • Anonymous says:

    maybe now SKG will start showing their numbers towards..AN ACTUAL CURE. leave the pink baloney and yellow ribbons aside for a moment- give us some support for those who now battle this prolific disease. What about prevention eduacation?

  • Teri says:

    I learned so much in your blogpost that the news about this recent issue of Komen v. Planned Parenthood, or any other breast cancer coverage, could convey. Thank you for sharing. Thank you for enlightening.

  • Dino says:

    SPREAD THE WORD for as long as it takes for folks to realize that this movement has turned into a derailed train! As a b.c. survivor I am sick and tired of the pink washing, what’s next PINK CIGARETTES!

    It’s absolutely ridiculous that their is not more focus on survivors and their current medical needs not to mention stage 3 & 4 needs!

    Glad to see America is finally waking up!

  • robin black says:

    Amazing, important post. Going to post it now.

  • robin black says:

    Amazing, important post. Going to post it now.

  • So glad I took the time to read your post and all of the comments. While I respect the opinions who take issue with a few minor details, they pale in comparison to the whole sad big picture. No need to repeat the well written comments that agree with you; I’ll simply say my hand is up- I agree with them and with you.
    Most importantly, I feel more educated, inspired, compassionate, saddened, & more angry than I already was with the “Pink Invasion”. For me it was a simple gut reaction at first- pink ribbons? Thoughts of my now adult girls long ago Barbie doll’s fairytale world & Bazooka pink bubble gum was all I could muster up.
    I’ve lost friends to breast cancer & I never saw a dime of pink profits helping them.
    As much as I’ve wanted to support this foundation, something has always stopped me. I donate money to causes when I can. Lack of money wasn’t the reason I’ve never jumped on the pink wagon. Now that I’ve read your post, now that I have a sister with aggressive sarcoma (thankfully there are no ribbons for that), I’d rather donate straight to the research, treatment & aftercare, not ribbons, T-shirts and the plethora of pink sales.
    Thank you for sharing your story, for doing all the research and most of all for your courage in standing up to what some feel (the pink ribbon) is as sacred as the American Flag. It is not.

  • Amy P. says:

    I wish you many, many more years of health and prolific blogging, tweeting, and writing for the education and entertainment of all of us! –@KinZ6

  • Tammy says:

    Lisa
    As always you write so elegantly, you write with intelligence. I’ve started to question these things over the last few years as well. I watched the video you posted a link for and the leader of the Susan G Komen foundation sounds like a politician, it’s sad really. I agree, she’s out of touch with reality-it’s almost as if it’s become a politician led corporation. I am so proud of you(even though I only know you through your writings), for speaking your mind. Please keep writing and speaking out.
    Tammy

  • denise says:

    I continually gain respect for you. This post is insightful and full of powerful emotion. I am so glad you took the time to write these thoughts down and that you shared them with us, here. xoxo

  • Jan says:

    Every year My Mom would ask me to walk with her for Relay for Life. You could buy lumaries that went to the America Cancer Society. They wore no pink. I regret not walking with my Mom, I was just too emotional. She was a breast cancer survivor and would walk 11:00pm sometimes. My Mom died in 71 days from a aggressive brain tumor, not related or caused by her breat cancer. She never mentioned the Susan G. Komen Foundation. I donated to that last year. Never again.
    But what has happened in my small community, it’s called, walk for cure, race for the cure,it
    s like the Susan Komen Foundation stole the real Relay for Life.
    Komen “Foundation” will never see a penny from me.
    Lisa,
    your poem is beautiful. I thank you for all your courage. To write about you and that foundation.

  • Eugene says:

    A nurse whom I know well when this topic first came out said that Planned Parenthood provided many other services to women also. And I believe she said it was a help to women of all incomes. And provided HIV services etc. And other services.
    It is a shame how we talk of things and when we need or want to discuss them, we cannot remember the topics clearly because at the time it was conservation that did not seem to be one that one would want or have the chance to pass on or discuss with others.
    The nurse told me that too many people are under the impression and ideas that Planned Parenthood just is concerned with abortions which makes them a target to the Conservatives and Republicans like Rick Santorum who uses the topic as a political issue, but also religious in his run for the presidency. If he has such views running for President, what will his views and determination be as President?
    Women should realize that the Republicans and conservatives do not support them in some of these issues just as it took an election of republican governors to find out Republicans and conservatives hate unions and their benefits.
    Women must get together and prove to men , husbands and religious and politicans they are a voice and important in society and this world also and men will not dominate them in necessary issues that concern women, their children, lives and health. Women should demand that results be shoown for all this money to these institutions as diseases seem to be increasing instead of decreasing.
    I’ve heard on news programs that the Congressioal hearing committee only allowed Jewish Rabbis and Catholic Priests to testify. Men whose so called Old testament called for men to be killed , women , some children to be taken as slaves and concubines and all property to be taken. Don’t criticize this remark: religious preachers love to preach about the Old Testament , but never mmention this aspect of attitude toward women. And Catholic priests who live , we are told a celibate life. And women who wanted to testify were ignored as though not there.
    This may be a bad example or poor one, but look at all the porno to see what women are thought of by men. Of sexual slavery. Of the abuse of children. Women must show they are a part of this world. They have earned a place in the military,but we read of them being raped. that surely doesn’t show respect for women.

  • […] angle from blogger and breast cancer survivor Lisa Bonchek Adams. She believes that the Komen group lost its focus some time ago—and that the value of Breast Cancer Awareness Month has declined in […]

  • A. says:

    The gun manufacturer just made a pink gun- has nothing to do with Koman. Everyone’s entitled to an opinion. Dont support gay marriage- then dont marry a gay person. Don’t like pink? Dont wear pink.

    • Lisa Bonchek Adams says:

      You totally missed the point, if you even read the piece. It’s not about pink at all. It’s about how the largest breast cancer fundraising organization mis-used funds, misled its donors and gives incorrect messages that early detection is the key to saving lives. Extrapolating from your logic: if I don’t support what they preach, don’t donate. Yup, exactly right. That’s the message of this piece: why I stopped donating. Not anything about wearing pink.

  • Theda says:

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  • Steven Johnson says:

    I am a gun owner. SBK won’t take money from a gun club. Our gun club was going to have a SBK fundraiser but they sent a letter stating they don’t want our money.

    I can’t understand why people who exercise their 2nd amendment rights can’t be people who want to find a cure for cancer. Can you?

    We don’t shoot people! The nut jobs who do kill use fertilizer, box cutters, and pressure cookers, too. I guess Komen won’t take money from farmers, dock workers and cooks ether, right?

    • Steven Johnson says:

      Sorry It is S “G” K not SBK

    • Mike says:

      It’s a rare day you’ll find me defending SGK but I’d make two points on their behalf here.

      First, we tend to generalize and judge entire groups by their loudest members, rather than the majority of their members. How often are all Muslims tainted by the actions of the most violent few? Without getting off-topic by discussing any one person’s specific views on the appropriate uses of firearms, since last December 14th gun owners and gun clubs are tending to suffer the same fate (except in their case, the loudest voice of the gun owners managed to block legislation favored by 90% of the American people and women, particularly, aren’t happy. And the SGK relies heavily on women.

      Which brings us to the second point…..

      If you follow back up the this thread, you’ll discover there’s already been one unpleasant (for SGK) experience involving guns (pink ones) – when some retailer tried to get some free publicity involving the sale of pink guns, ostensibly to raise money for SGK. It doesn’t help the cause of “respect for gun owners” that that turned out be a bogus claim and that SGK had never heard of, little less from, the dealer.

      Any organization trying to maintain its image (and the SGK is still trying to recover from a self-induced major screw-up over Planned Parenthood in that regard) needs to be careful about with whom it associates and what the consequences of that association may be. Frankly, I’d be suspicious, myself, about whether a group that caters primarily to an already saturated male market is really more interested in fighting what is (overwhelmingly) a woman’s cancer or in a gimmick to sell memberships to women. If the former, the Prostate Cancer Foundation (yes there really is one) may be more up your alley….

      • Steven Johnson says:

        With all due respect, pink is a color that many women like and not all pink guns sellers are claiming to raise money for SGK. And yes, our gun club has many women members. We actively look for women by having a free “Women on Target” event every year.

        I contacted some gun manufacturers who make a pink gun and the response is that SGK won’t accept the money raised and women still want to buy pink guns.

        I know for a fact that our gun club received a letter from SGK stating they would not accept the money if we sent it to them.

        I can’t understand how you can refer to gun legislation in this discussion. If I didn’t support the ineffective gun legislation, SGK will still take my money, if I send a personal check. But if gun club members want to use their vast membership to raise much more money, somehow it is an image problem for SGK. Really?

        You are absolutely right about the self induced image problem with planned parenthood. I was very upset to find out SGK isn’t spending money on research but are spending money for mammograms not tied to any research group. Personally, I do not trust planned parenthood who does not perform any cancer research but does push abortions. I guess they think aborted babies won’t ever contract breast cancer. SGK should run from using their money raised for research to fund non-research organizations. Finding a cure for cancer won’t happen if the money raised is spent for any other purpose.

        Personally, I am glad to find out about SGK. Our gun club is actively searching for a research cancer charity and will raise thousands for research. We support wounded warriors and will be as active for cancer research.

        I have cancer and won’t ask for money for treatment but you can bet I am hitting up everyone I come in contact with to have them help support finding a cure. Hmmmm isn’t that what SGK SAYS they are doing?

        • Mike says:

          I’m not going to get into a gun debate with you on a Breast Cancer Forum. The issue of pink guns was about one specific seller’s claim, not pink guns in general, no matter what I think of the general idea.

          I will point out (as I did on this forum way back in February) that, if your goal really is to contribute to cancer research, SGK is a very poor way to do that, since SGK is nothing but a middle man (or woman). The only research SGK does is into the organizations that do research into cancer. If you give to organizations that do the actual research, 100% of your money goes to those organizations. According to SGK’s 2011 tax forms, only $71.7 million of the $190.1 million in revenues were distributed as grants to other organizations. That’s 37.7%.

          • Steven Johnson says:

            You are right, except you brought up gun legislation, not me. I guess the point is buying pink guns for cancer research would be really good IF they would take the money raised. The start of this thread was about a company exploiting the SGK name to get more money. Perhaps, like what happened to our gun club, they had good intentions only to be shut down by the group they intended to help.

            Also, you are right, Susan G Komen organization doesn’t do much for research even though their solicitation is about “Finding a cure.” SGK has a low percentage of actual dollars getting to those they claim to be supporting. But, that’s another subject.

          • Steven Johnson says:

            Salon article:

            Turns out that in 2011, it spent just 15 percent of its donations on research — nearly half of what it did just a few years prior. And, significantly, its founder, Nancy Brinker, the woman whose vow to the sister she lost to cancer has served as the organization’s poignant, relatable narrative, stepped down as its CEO. In August, Brinker announced she was taking on a new role, as chairwoman of the executive committee. (She is, however, still listed as its CEO and founder on the Komen site. Komen says it’s still looking for her replacement.) In short, the whole series of fiascoes was so appalling that Deanna Zandt, author of “Share This! How You Will Change the World With Social Networking,” called the Komen fiasco a teachable “example of what not to do.”

            Yet after more than a year of bad publicity and declining participation, Brinker herself seems to be doing just fine. As Cheryl Hall pointed out this weekend in the Dallas Morning News, Brinker made “$684,717 in fiscal 2012, a 64 percent jump from her $417,000 salary from April 2010 to March 2011.” That’s a whole lot of green for all that pink.

  • Steven Johnson says:

    For the record I do support mammograms but the results should be part of a research data collection if SGK is funding it. Remember they are “Finding a cure,” right?

  • Thank you for sharing this great post. Very interesting ideas! (as always, btw)

  • Kathi miller says:

    I now donate money directly to people I am aware of that need money for meds,etc. I am a survivor and needed money for meds and got nothing from any cancer charity.

    • Bobby says:

      Neither did my beautiful wife. When the insurance dropped her and our money ran out so did the “Rats for the Cure” and everyone else.

  • Alexander Berkmann says:

    Hmmm…I kind of like the gun…

  • Jessica Casamassima says:

    THANK YOU for putting this out there!!!! My mom passed away from breast cancer this past July, at the age of 48. But before that, she had dedicated years of her life to being an advocate for breast cancer organizations and helping other women who had been newly diagnosed. She even traveled to Washington DC many times to meet with legislators (with NBCC and MBCN). But the one organization she never did any work for was Komen. She would always talk of how political and misdirected they were and people were always so surprised and disbelieving. She was (and I still am) absolutely sick of all the pink ribbons plastered everywhere throughout October. I’ve had enough of this color.
    The issue is no longer raising “awareness”. We’re all more than perfectly aware that breast cancer exists!! The issue is helping women who have been diagnosed and, even more importantly, doing more research into stage IV, or metastatic, breast cancer. This is not a happy, pink problem. It’s much more serious than that and Komen doesn’t seem to care about that at all.

  • Kathi says:

    I am a survivor and totally agree. I emailed Komen and told them that when nancy brinker gives up her 68percent salary increase I am done with Komen!

  • John Hughes says:

    It’s called marketing, get over it.

  • Danielle says:

    Really proud someone had the guts to connect these dots. I have slowly yet surely become disenchanted with the month of October’s shoving-down-ones-throats with iridescent pink shoelaces on football players who cannot donate a cent of their multi-million dollar salary. It’s all about publicity and while I understand how crucial “the word” is, your “wording” in this piece here is far more effective than any Komen-telemarketing guilt-trip I have been put through recently. On one side, I don’t want to knock the gun idea because the Komen foundation is simply targeting another group of individuals who may be more likely to go to a shooting-range than put a pink ribbon in their hair and attend a fundraising event in black-tie. However, if the foundation plays it so fast and loose with its products, why hold onto the slogan “For the Cure” so tightly. They need to either learn to grow and not discriminate as to whom the phrase is being used as long as money is raised, or put their tight leash on their products as well as their phrasing. Pick one, Komen, you cannot have both ways. I hope no one finds your article as a form of bashing an overall honorable cause… because corruption exists even in those with the brightest halos (sometimes in those especially). You clearly are a brave woman shown not only through your fight with this evil disease but through the continuation of GUTS displayed again in writing a piece such as this. Stay discerning, stay strong–!
    -Danielle

  • Kathi says:

    We all know about it let’s work on the cure. None of my friends attended the run this year and I don’t think they met their goal. I keep getting emails asking me to help meet the goal. I want a cure so let them put their money where their mouth is instead of Nancy’s salary.

  • Mari says:

    Wow, amazing piece. I am also disenchanted with Komen, but for a different reason. I am a breast cancer researcher. A couple of years ago, I was preparing a grant application for submission to SGK. And a few days before the deadline, hurricane Irene hit. We lost power for a few days, our lives were disrupted. I couldn’t work on the grant. In addition, several people were supposed to provide me with letters of recommendation, and they were also affected. I emailed the grant office at SGK and politely asked them for an extension. They refused stating that I had weeks to prepare the application, and I was at fault for leaving it to the last minute. Fine, I pulled a few long days, put the grant together, and submitted. A few days later, SGK notified me that they are administratively rejecting my grant because I was missing a required document – a CV for one of my referees. In the whole post-Irene mayham I just missed it. Because this was a peripheral document, and not a document that could be improved with extra time to make the application look better, like the research proposal itself, I wrote back and pleaded to give me another chance and allow me to send the CV in. They refused, saying it would be unfair to the other applicants. So here you go. I will never, ever deal with SGK again.

  • Vickie Zinanni says:

    Thank you for eloquently saying what I have been feeling for years. I have lost 3 beautiful women to breast cancer. My maternal grandmother in 1990; my paternal grandmother in 2001; my mother died at the age of 64 on December 18, 2013. I hate the color pink! I believe most women know about breast cancer – we are aware! If Komen actually spent their $$ on the Cure, I’d consider donating. Until then, I’ll continue working with other organizations.

  • Dr. William Conley Th.D., Ph.D. says:

    After my mother had cancer and I seen and witnessed how that organization works I would have to say that the Susan G. Koman Foundation needs to stick to their original mission of finding a cure or as a support service but not do both.
    In doing both they spread themselves too thin and lie to the public and those women with cancer. They raise money for research and use a social support platform to do so and when a woman really needs help they have no money to help since it all went towards research.

  • Denise says:

    APPLAUDS to everyone that speaks their mind!!!

    I have been saying this to all my breast cancer friends for the last 6 years…they did not like it, but years later they realized it for themselves.

    Susan lost her vision, the grass roots ORIGINAL vision was convuluted years ago! I advocated and raised alot of money like most us survivors have as well as our families, friends and other’s, UNTIL, Susan decided to enter the political arena.

    Here we all are busting out butt’s for years …and all the sudden she starts cutting off funds, who made her the judge? Pretty sad. It does not matter if we agree with Planned Parent Hood or not, it’s about HELPING “anyone” that needs assistance. Insane that this lady took such a great movement and became over zealous. It turned into a #’s game…horrible 🙁

    I do not care who you are, what your beliefs are, whether I agree with you or not…it’s about “BILLIONSANDNOCURE” (that’s my screen name) and I am sticking to it.

    I was very immersed in the whole pink cult mentality until I started awakening from my cancer coma (sort of speak) the fuzzy survival state that most of us go through. It’s all about rah rah and raise raise…proactiveness, let’s go after it ….after what? what are we pursuing?

    Assisting commericialism (what a joke) here I will buy this pink processed hunk of unhealthy junk if you give us some of your change, it’s ridiculous.
    She only stepped down because she realized the train was derailing so badly her warm up rally speeches were not as effective. Why did it take this long 🙁 …we all have gone through it in our own ways and dealt with it on our own time. The GREAT news is that so many are wising up, it’s time!

    It’s been a long time for me and honestly I have a challening time in October, it’s not cool to pull on people’s heart strings, for profit, it’s bad news! We all now watch more of what we eat, we are all a lot more health conscious as well as educated on what foods are better for us, ect. Why do they continue to ENDORSE literally chemical induced JUNK!

    Few years back I was sitting with one of the presidents of a Susan. G. chapter near my home
    as she was communicating to survivors as well as the volunteers how healthy their pink ribbon yogurt was, not it’s not, it’s contains hormones and they KNEW IT! I brought it to her attention on the spot, and she replied “they have looked into it and they have determined it was safe” safe for who!? Not cool 🙁

    I have always said we need to educate as many folks as possible so they realize accountability and transparency should be at the top of the list in any charity. This is exactly why I APPLAUD all the women that are in the know. As for the bad comment, poor person does not know enough, give them time they will get it.

    Thank you for being candid, we need individuals like yourself that focus on uncovering the truth!

    Survivors are struggling both mentally and physically (as you pointed out) and that never seems to be a priority. Working as a facilitator at Loma Linda’s B.C. on-line program, the #1 focus is mental health.

    YOU LADIES ARE ALL AWESOME 🙂

  • Deborah From Montana says:

    Hi Lisa,

    I’ve been following you since my diagnosis (State1 Grade 2 intermediate Oncotype DX Score 43 2.0 cm Invasive Ductal Carcinoma and a secondary DCIS) since my diagnosis on 7 March 2014. Research has shown no improvement in outcome between a mastectomy and lumpectomy. I chose lumpectomy to remove both. Time will answer whether or not any cancer cells escaped through blood and lymph. I just finished my 4th chemotherapy last Wednesday (Decetaxel/Taxotere & Cyclophosphamide). Begin 2 months of radiation the part of July and then the (Black Box) drug Tamoxifen to starve the hormone receptive cancer.

    The more I learn about the Susan Komen Foundation, the more surprised, shocked, angered and O.U.T.R.A.G.E.D. I am. The foundation spends approximately 15% on research which might actually result in a cure and 18% on fundraising and costs.

    Forget politics and personal beliefs. If I wanted to fund family planning, I’d make a donation to such an organization. Our tax dollars fund that. Family planning is rarely a life threatening condition resulting from a lack of choice, unlike breast cancer.

    Culturally I’ve learned that family and friends want me to cheer them up, with a “positive” attitude and false front. I actually gave this a go for the past couple of months. Never felt so phoney in my life. The amount of stress and mental juggling required to keep up a false and “positive” face, is emotionally and mentally taxing.

    Additionally, the false and intentionally misleading information has brainwashed so many women supporting the foundation. The definition of DCIS online, leads women to believe that if they are diagnosed with DCIS, it’s little more than a mosquito bite to be taken care of. In some cases, scientist don’t even refer to DCIS as cancer. The deception is the fact that DCIS can and does spread through the lymph and blood system. Women diagnosed with DCIS feel confident that they are “cured,” because they caught it early. How deceiving information provided to women in 2014 can be. But, Komen keeps on giving…false information. What a betrayal to women. Honestly, I’m thinking black and white ribbons with a skull and cross bones would be more appropriate to gain the attention of women and help them to understand the seriousness of breast cancer. Sounds tacky and not so pretty, but it would send a message that Komen is not getting out. Breast cancer kills and there’s no cure.

    I’m so sorry for what you’re going through.

    …………………”Susan G. Komen For(got) The Cure”…You got it right Lisa!………………….

  • Cindy Hansen says:

    Thank you for these words of wisdom. My sister passed away from complications due to breast cancer and treatment 9 years ago at the young age of 29.

    I am often amazed at the “pink washing” abundant in our culture. I was approached yesterday at a gas station to purchase a spray can of window cleaner. The first sales pitch out of their mouth was help support breast cancer awareness. I asked how much of the money was being donated to research/awareness and to what organization. She told me that she thought it was about 50¢ of the total amount of the can. She didn’t tell me that it was the Susan G. Komen foundation. I found that out for myself as I drove away declining the sale. I resent being solicited at the expense of the dignity of my sister’s death.

    I agree with you that the aftermath of breast cancer is rarely mentioned. It saddens and angers me that my sister’s demise and the demise of countless women due to breast cancer is sensationalized in this way. All in order to feed an organization that has lost its purpose and traded it for greed and politics.

    I myself have had a lumpectomy and my other two sisters have had complete mastectomy and reconstruction. I see my scar from the surgery everyday and feel less than I did before. I know that it is not rational but yet I still feel it. I also know what I have endured under the umbrella of breast cancer is far less than many other women. I guess the point I wish to make is that I am, along with all the other women a person not a dollar sign. The Komen foundation has not and does not find a cure. They aren’t going to bring back the missing half of my breast or my sweet sister for that matter.

    I stand as a woman who will not throw money at an organization hoping that they know best and can help find a cure while making high paid salaries as others who have little volunteer. They are bottom line, in my humble opinion, at the very least ineffective if not criminal. Does anybody think that in the current circumstances of wealth the Komen foundation enjoys; albeit at the feet of cancer awareness that they would end their streak with the cash cow by finding a cure? Just food for thought…

  • BarryG says:

    The purpose of Susan B Komen is to perpetuate and grow Susan B Komen. That is all.

  • A says:

    I came to this website after I was shopping for carpet on the internet and saw the Susan G Komen name on some carpet padding for sale. I had to wonder where all this money was going. Carpet padding? Good God. The name and pink tagged merchandise is everywhere. How much money do they need and with all of it shouldn’t we be super close to the cure by now? Both my Grandmothers had breast cancer and died a few years later from another bout with cancer- lung cancer. My husband died young of gastroesophageal junction cancer which is very deadly, on the rise in men in our country and one of the ones lowest funded. I watch all the commercials for the acid blockers and think to myself how so many people don’t even know maybe they should be screened for this deadly cancer. Having acid reflux all the time is not normal but boy the commercials on tv want you to think so. How we should be focusing on eating clean and ridding the toxins in our bodies. All cancers are important. Research is important in all aspects of health and wellness. Cancer is a terrible disease I would not wish on my worst enemy and the commercialization of breast cancer is disgusting. Thank you for this blog. I wish all the best for you and all survivors.
    Be well

  • Brilliant! Thank you for sharing your journey and insight as to why you took your charity time and money elsewhere.

  • This has helped me (us) decide where to send our donations. For the month of Oct. Our company will be putting together a donation.For each customer we will be performing services for the company will be setting aside money for breast Cancer awareness. On another note I have lost my ant gene to cancer. I was young and very close to her. At least I still have memories that cancer cannot take from me. For those of y’all that are going through this y’all are strong and my heroes. Remember their still people that care.

  • Lia Shorter says:

    All I can say is RIGHT ON! The Susan Komen Foundation has truly forgot the cure and have been off the beaten path for many years now. This foundation needs to be exposed for their greed and lack of genuine support for women/men and families who fight daily to deal with the outcomes of breast cancer. I am an Ob Gyn who is in private practice, so diagnosing breast cancer is something that I have to face with my beloved patients. I have my patients followup with community leaders and other patients and families who have conquered this emotionally and physically taxing cancer. In our office, we make it to have a Girls Night Out that supports breast cancer that my patients are forced to battle…both financially, physiologically and physically. Thank YOU for sharing this blog. I will share it with my patients who will appreciate TRUTH.

  • Pauline says:

    I had a double mastectomy in March 2008, after being out of work four months I contacted the Susan G Komen foundation in New York, to ask for some monetary needs. They told me they fund big research and they could not help me. But yet they exploit cancer survivors the very woman they so call raise funds for. Its not true. I was told by the woman on the phone,I’m sorry that we cannot help you Paula in Virginia I tell everyone I know about this experience and not to support het give locally to cancer patients instead.

  • April says:

    Pink ribbons- To me they symbolize the pain and suffering that no one should have to endure. The worry and stress that no family should have to undergo. The impending doom a daughter feels when her mother says, ‘Feel this and tell me what you think.’ The waiting and watching of the clock, waiting for a doctor to come through those double doors and tell you ‘if they got it all’. The nauseating fear of x-rays and lab reports. The mortifying drive in the middle of the night with your husband and children when the hospice nurse tells you her breathing is ‘shallow’.
    I’ve been wanting to scream that at people for years, including my family. Thank you. http://www.notquitewonderwoman.com/breast-cancer-awareness-month-october/

  • April says:

    And one a good note- I love the pictures of the family doing something active in response to a horrible situation.

  • Deborah in Montana says:

    Dear Lisa,

    I read what you wrote today. Thank you for that.

    I purchased a party dress on eBay for my 3 year old grand daughter today. No party to go to, she just loves the frilly dresses and I’m happy to oblige! 🙂

    When I went to check out (pay) I was provided an option through eBay and PayPal to DONATE to the Komen Foundation. I about choked on my miniature Snicker’s bar (dipping into the Halloween candy!).

    The Komen Foundation is everywhere it seems. The tech’s at my hospital who give us mammograms have them embroidered on their scrub tops, the hospital gift store is loaded with the pink crap and those nasty “Taa Taa” (did Ispell that right?) t-shirts. Staples has note pads with the pink ribbons stamped on too.

    I went to have a manicure several weeks ago in Bozeman. Parked outside the salon was a black, diesel, dual cab truck which had pink ribbons custom printed all over it. I could have thrown up. Unbelievable.

    People don’t know that the Komen Foundation distributes such a small portion to research. And it is research that will one day find a cure for all cancer.

    Thank you for sharing yourself and information with anyone willing to read.

    Deborah D.

    • Beth Smith says:

      I am so thankful for the honesty of this post! My disease wasn’t cancer…it was multiple sclerosis. If there is a disease to make some money because of the fear and aching hearts of those associated with it, someone will find a way to cash in. I am sick to death of the MS Walks and 5K runs. The whole “ALS Ice bucket challenge” just drove me to comment and annoy some FB friends. Did I really need that to be aware that ALS exists? Glad that I kicked out multiple sclerosis, but I am amazed at how many people do NOT want to get healthy or rid of their diseases that give them some attention…

  • Jane A says:

    Tomorrow will be two years since I lost my sister. I hate October and the month of pink. People don’t understand your loss. .. your supposed to support those who survived.
    Why did my sister be one that had to die?

  • Deborah in Montana says:

    Dear Jane A.,

    I was diagnosed with a 2 cm (invasive ductal carcinoma) and a DCIS (ductal carcinoma in situ) in my left breast, the first week of March 2014. I had surgery to remove both. I then went through 3 months of chemotherapy and 34 radiation treatments.

    While going through radiation treatments I began to notice that only one other lady had no hair (chemotherapy). I began to talk with the ladies with hair who had treatment sessions before and after my treatments and the lady “Karen” who like I, had no hair and had undergone chemotherapy before radiation.

    The ladies with hair had all been diagnosed with BC very early, had undergone lumpectomies. Karen and I had not been so fortunate.

    It dawned on me then how important yearly mammograms are. Catch this stuff early when it’s breast threatening and not life threatening.

    Will Karen and I be the 2 out of 10 that don’t survive 2, 5 or 10 years?

    There are also new genomic tests which tell oncologists how aggressive breast cancer cells are. So, once again, huge differences in breast cancer. My oncologist chose the Oncotype DX test.

    A small section of my breast cancer cells were sent to the lab that performs these tests. On a scale of 1-100 breast (colon & prostate) cancer is rated for aggression. Are the cells weak or strong? A number between 1-17 is considered not aggressive. A number between 18-32 is considered relatively aggressive. A number 33 and over is considered very aggressive. My number came back as a 42. This is concerning. This test (and several others) helps us to understand why some women (and men) are at greater risk than others.

    In July (between chemotherapy and radiation) I visited Swedish Cancer Center in Seattle. They performed ultra-sounds and mammography and found suspicious areas in my right breast. I had a biopsy in Montana and then a lumpectomy in Seattle. I have what is called Atypical Epithelial Flat Cells in my right breast. I think that’s right. In layman’s terms, I have changing cells in the lobes of my right breast. Changing cells are never a good thing.

    I have no family history of breast cancer and I’m a genealogist who has traced both my maternal and paternal side a minimum of 200 years, some lines as far as 300 years. Who knows “why.”

    Why your sister? Why Lisa? Will Karen and I succumb to breast cancer? This horrible disease doesn’t appear to be choosy. It’s an equal opportunity plague which has been inappropriately linked and marketed with cute little pink ribbons.

    One thing I try to do at every opportunity is to inform people of one fact:

    1. 80% of all women who are diagnosed with BC have no family history. Those with mutated BRCA I and II are very rare. Most of those ladies are aware and receiving care of some type.

    Urge all the ladies you know to take yearly mammograms seriously.

    I am sick of women who were fortunate to have very early detection where their life was not at risk, who refer to themselves as a “Survivor.” Breast threatening but not life threatening. Those women do not represent women like Lisa, your sister, Karen or I.

    Some of us sit on a fence wondering… Some like Lisa are brave enough to share education, knowledge, and the physical and emotional hardships they endure.

    Deborah

    • Jeanine says:

      What an incredibly insensitive thing to say that you are sick of the women who were lucky to find their breast cancer “early”. It’s not a contest. Cancer is cancer. How do you know it won’t come back? Anyone who survives cancer no matter what their stage was is beyond fortunate. So mean spirited.

  • eileen martinez carey says:

    Thank YOU SO much for pointing out THE OUTRIGHT HYPOCRISY of this (might i add ALSO MANY other SO called NON Profit “organizations”..i have personally worked for many “NON” Profits ..as a Counselor and let me tell You the ONLY People that are “NON” Profit are the ones that do all the heavy work..in other words; sadly TOO typical the ones on the top get a LOT of pay while everyone else gets regular (not enough to cover any real bills kind pay i.e “minimum wages” ) pay..This is SO typical of mostly how everything in corporate business operates…It is beyond vile. They get the advertizing and promotions for BIG companies that ACTUALLY SELL PRODUCTS that GIVE People cancer!!! NOW these corrupt PERVERTED creeps (like koeman & others) have not only signed up with “kentuky” chicken..they have NOW signed up with a company that does FRACKING!!!! really???? !!!!! It is UTTERLY INSANE & PERVERSE! Fracking is when they FORCE at incredible pressure HUNDREDS OF HORRIFYING CHEMICALS into the Earth to cause the Earths Rock to break up so “gas” can be extracted ..kind of like wringing a wash cloth to get the last drop of Water..EXCEPT they use CANCER CAUSING CHEMICALS THAT LEECH INTO OUR DRINKING WATER!!! So good one koeman; You now support THE VERY CORPORATIONS THAT ARE KILLING US!! SICK HYPOCRISY or is it deliberate PROFIT over Human compassion…shame on ANYONE who thinks that is good…

    • Kathy says:

      Hello Eileen, my response was to the post above mine, from Deanna Nelson who has a link to a go fund me page and a post about training your brain to cure your body of cancer.

      It is these type of posts that play on peoples desperation and ask them to send money for snake oil that I can’t stomach. I have watched people fall into these traps and give money they don’t have all in the hopes of finding some obscure cure and it’s devastating to these people.

      In response to your post: I agree with you, these large organizations are lining the pockets of executives and sitting back and watching the bank account get fat.

      I agree, they are tied in with the same companies that create the products and the chemicals that make us sick.

      I don’t have a cure for cancer, I don’t know what that cure looks like but I do believe that we have some very find doctors and scientists that are working for it and are getting closer.

      I say this because I have met with some of them, I have toured the labs and I have seen the research and I have asked the questions. I have posed the question that everyone has – does science really want to find a cure for cancer? Isn’t it in the best interest of science and doctors not to find a cure? Cancer is big business and the best answer I got was from a doctor in at Mass. General in Boston, I toured his lab, I met with him and his staff and I saw this research, I was there the day they made a breakthrough and it was amazing.

      What he said to me was this: Yes, we want to find a cure for cancer. Every doctor and every scientist wants to find a cure for cancer and these are the reasons: 1) The doctor who finds the cure wins a Nobel prize. 2) The doctor who finds the cure is the envy of all his friends and colleagues. 3) The doctor who finds a cure will become very wealthy.
      So you see, the doctors are not big pharma, they are not the people getting rich off others peoples sickness and this doctor could have given any answer, he could have played up the wanting to help everyone answer, he could have given a sob story about someone he loves but instead, he gave a very honest and very human answer.

      To address your statement on whether you donate to non-profits or not, I would say to you there are some very worthy non-profits out there and whether you choose to donate or not, I would ask that you learn the name of this one, look it up and tell people about it.

      The people that work for this non-profit do so without getting paid – not a penny ever – no special comps that make up for not getting any financial pay and no extra gifts on the side – absolutely nothing !!!

      They fund research only after several meetings and tours of a lab.
      They don’t fund big pharma, large non-profit organizations, or pretend that they have all the answers to cancer and are not in partnership with any other companies.

      They work very hard, around the clock, they request grants from companies and organizations that do not require anything from the non-profit and do not have a say in how the non-profit uses the grant money.

      They do not focus on one particular cancer, they help women with all cancers.

      They spent a lot of time meeting with women and their families to see what the women needed most and they continue to do it. This started through a Komen walk and realizing after speaking with women and their families on this walk that Komen and the other large organizations were not giving women what women needed.

      What they heard was: “I felt selfish for wanting a cure and my hair”; “People think it’s only hair and it is, until you wake up with it on your pillow or in your shower drain” “I am a walking billboard for cancer” and “I lost my identity along with my hair” and “She didn’t want to die bald but we couldn’t afford a wig and pay our bills and the insurance company kept denying her”. These statements all come directly from women and their families.

      What they do is provide, at no cost to the women, brand new wigs that the woman picks out, brand new head scarves, brand new hats – all to allow the woman a sense of herself again.

      They work with salons and makeup artists that will work with women, for free, to help them understand the changes to their skin and to help them with makeup and skin care products that work with her changing skin.

      They offer a resume service for free resume review, mock interviews, training, etc… for the man or woman with a cancer diagnosis and their significant other – because they understand that cancer is expensive and that people need to change jobs and/or reenter the workforce after a diagnosis of cancer and it’s very difficult to go into a new job and explain – they help prepare the job seeker for having that conversation.

      I know about this organization because I started it 5+ years ago after a friend was diagnosed with breast cancer and I felt helpless so I did a couple of Komen walks and I was unimpressed by the amount of money they spent on these walks, all I could see was that money would help so many more women.

      I talked to hundreds of women and I listened to what they needed and along with a cure, which we all want and need, they wanted to look and feel like themselves, they wanted to go out in public without being stared at and without getting the looks of pity for themselves and their families.

      I work with amazing men and women, and we work very hard and we pay absolutely no salaries because the money we bring in needs to go directly to women and their families and that is what we have committed to doing.

      So if you decide that you want to work with or donate to a reputable non-profit that is 100% for the women and families and takes no payment or other compensation of any type, please consider http://www.greenzinnia.org

      We are always looking for people who sew or knit to make hats.
      We are looking to make sure women know who we are because we can help with the things that other large organizations cannot or will not help with.

      We are 100% legit and I am happy to answer any questions you have and provide you with our federal non-profit ID as well as a copy of our letter.

      What helps us most is getting our name out to those who need it.
      Thank you for caring enough to add all of the information you did about the chemicals in our meds, our products and our foods – it’s very important to get the word out.

      Kathy Boni
      Director – Green Zinnia, Inc
      http://www.greenzinnia.org
      greenzinnia@Comcast.net

  • Lois says:

    Although my niece who is Stage 4 MBC has everything pink, if I were to ask her the following questions, none of the answers would be SGKF, most would be our local American Cancer Society. I’m sure they also have critics but she has tangible evidence of their help.
    Who provided your wig to you when you were bald?
    Who provided hats for you when your hair started growing back?
    Who offered to help if you lost your insurance and needed chemo?
    Who got you free housecleaning services while you were sick taking chemo for months at a time?
    Who offered to talk with you about your initial diagnosis to get you prepared for your journey?
    Not one shred of help from SGKF.

  • […] so much an elephant anymore, because a lot of people are coming to realize just how hard Komen sucks. But not enough people realize that yet. It’s still picking up […]

  • Deborah in Montana says:

    Dear Jeanine,

    For any woman who has been diagnosed with Ductal or Lobular Carcinoma “In Situ” to refer to herself as a “Survivor” is absurd and “insensitive.” What exactly did these women survive? A lumpectomy?

    For these fortunate women to compare themselves to the women whose Breast Cancer has spread is extremely ignorant and “insensitive.” Their breasts were in danger, not their lives.

    I am extremely offended by your comment and by women like yourself whose lives were never in danger who refer to themselves as a “Survivor.” You are sending a message to young women that Breast Cancer is something that can be fought. It is either removed entirely or it will take your life. Maybe you should educate yourself so you can become a little more sensitive.

    Since you’ve categorized yourself as a “Survivor,” how do you categorize women whose cancer has spread and will eventually succumb to this horrible disease?

    You see Jeanine, there is NO CURE, only early detection and complete removal if possible.

    Please explain what a “Survivor” is.

    • Diana Miner says:

      Absurd??? You are being absurd. I had a lumpectomy in 2001 along with chemotherapy and those 34 rounds of radiation. Am I a suvivor? You bet your bibby I am. I then had a recurrence in 2014 that requred a mastectomy along with more chemotherapy but no radiation since Ihad it previously. My first cancer was hormone positive, did the tamoxifin and arimidex as well. This second cancer was Triple Negative, even more scary. Just because a woman “only” has a lumpectomy does not make her any less of a survivor than any other kind of surgery or treatment. Once we have cancer we ALL live with the fear of it returning. The chances of a recurrence or not lessened because of a lumpectomy. I am sorry to be so off topic but when you say that because someone did not have cancer “as badly” as you did that makes them any less of a survivor you’re just plain nuts. Lumpectomy, mastectomy, 1cm, 5cm, chemo, no chemo and radiation or no radiation – survival is survival for all of us. Stop your pitty party and look around at everyone who survives this disease, breast, colin, lung (I recently lost my niece only 3 weeks after diagnosis). We all fight, maybe at different levels and to different extremes, but we all fight and WE ALL SURVIVE, until we don’t. BTW – I looked at Komen right after my first diagnosis, opted to never contribute and have talked several others out of contributing or taking part in “The Race.” Good luck and God’s blessings to all you fine women (and men) on this site regardless of your stage of survivorship.

      • Deborah in Montana says:

        Before posting on this site, you should familiarize yourself with Lisa’s personal belief’s. Lisa did not believe in God and had no appreciation for “fighting metaphors” used by those who have cancer. Do you know what a metaphor is? Susan also didn’t believe in or care for words which label people, like “Survivor.” Neither do I. It’s extremely disrespectful to all who have succumbed to cancer and other diseases.

        This reminds me of the cute (not so cute!) t-shirts which are emblazoned with “TA TA”S.” Now, how in the hell does that help or support women who have lost their breasts or lives to breast cancer? Like the pink ribbons, cute but pathetic.

        Do you support the Komen Foundation? I bet you’ve got pink ribbons everywhere. The Komen Foundaton has been able to effectively market breast cancer with sweet little pink ribbons, yet spends less than 20% on research. Research is the only way to find a CURE. Lisa said the Komen Foundation “forGOT the cure.” That was memorable and spot on.

        Have you read Lisa’s posts? From what you wrote, you have not. You have no idea what she believed personally or medically.

        Read what she wrote: “Why I Divorced The Komen Foundation.” You can find it to the right on the main page.

        You refer to yourself as a “survivor.” How would you label the women, men and children who like Lisa have succumbed as a result of breast cancer, any other cancer or disease? Maybe “Succumber?” Geeze, get off the horse you’re on!

        You wrote: “My first cancer was hormone positive, did the tamoxifin and arimidex as well. This second cancer was Triple Negative, even more scary.”

        I’m glad you understand these are two entirely different cancers. This is a new cancer altogether. A new occurrence not related to the first which apparently didn’t invade your body. You didn’t mention how large the tumor was, if it had spread (Invasive) or how it was found (mammography, MRI, ultrasound?). Were either tumors deemed “invasive?”

        You wrote: “Just because a woman “only” has a lumpectomy does not make her any less of a survivor than any other kind of surgery or treatment.”

        I never suggested what you wrote nor do I appreciate you manipulating my words. I had a very large and invasive LUMPECTOMY to remove 2 cancers at once! You are not an honest person. Very recently the new standard in breast cancer oncology, is to perform a lumpectomy, obtaining clean margins whenever possible. This seldom applies when someone has already had one cancer in the same breast. Then a mastectomy is usually the only option. But, we have choices.

        Most women are given a CHOICE between a lumpectomy and mastectomy even with invasive cancer, unless the cancer cannot be contained in surgery (obviously has invaded other areas and containment cannot be achieved).

        Most cancers travel through the blood and lump system. That’s called angiogenesis. The cells build paths to lymph and blood vessels and travel to other parts of the body. There’s no guarantee when a tumor is removed that a few cells didn’t get away, so to say, to another area of the body. Will chemotherapy or radiation kill those cells? Who knows. Only time will tell.

        You wrote: “Once we have cancer we ALL live with the fear of it returning.”

        That is true. But, if educated, we also realize that if breast cancer is found at an early stage (DCIS/LCIS) and still surrounded by healthy, non-cancerous lobular or ductal tissue, clean margins are obtained, the risk that it has spread is almost zero. Those who should worry are those whose cancer was invasive.

        You wrote: “I am sorry to be so off topic but when you say that because someone did not have cancer “as badly” as you did that makes them any less of a survivor you’re just plain nuts”

        Dear, I never wrote or said anything like that! “as badly.” It’s clear the cancer you were diagnosed with in 2001 (almost 14 years ago) had not invaded your body. As an example, Lisa’s breast cancer invaded her body. I don’t think you understand the difference. Shame on you.

        You wrote: “Lumpectomy, mastectomy, 1cm, 5cm, chemo, no chemo and radiation or no radiation – survival is survival for all of us.”

        No, it is not. Someone whose cancer was small, encased in clean margins is not and will not go through what Lisa or countless other women are or have gone through. SHAME ON YOU AGAIN! You are trying to compare walnuts to bananas.

        You wrote: “Stop your pitty party and look around at everyone who survives this disease, breast, colin, lung (I recently lost my niece only 3 weeks after diagnosis).”

        Are you serious? The people who survive are not battling for their lives! Their cancer didn’t spread. Its those who succumbed that I will remember. Those not fortunate to have been diagnosed at an early stage.

        It seems to me you are someone who has probably announced to anyone who would listen that you are a “Survivor” of breast cancer. You are one reason women tend to not get screenings, because they think, “Well, there’s lots of ‘Survivors,’ so if I am diagnosed, I’ll be fine.” Do you know how many women actually believe there is a cure for breast dancer? Thanks to all the “Survivors” and hideous pink ribbons.

        You wrote: ” We all fight, maybe at different levels and to different extremes, but we all fight and WE ALL SURVIVE, until we don’t.”

        I CANNOT BELIEVE ANYONE WOULD WRITE SUCH AN ABSURD STATEMENT! LOL!

        There is a distinct difference between a lumpectomy and mastectomy. There’s a big difference between cancer which is contained in an area (not life threatening) and cancer which has invaded the body. Yes dear. there’s a big difference. I bet you use the “Cancer card,” every chance you have. How disrespectful. Do not compare your cancer to anyone else’s cancer. No cancer is the same. Your philosophy is scientifically false.

        You wrote: “Good luck and God’s blessings to all you fine women (and men) on this site regardless of your stage of survivorship.”

        Now it’s a “Stage of survivorship?” Are you kidding? You are a piece of work. FYI: Lisa didn’t believe in God. I love it when people end a spew with something like “God’s bessings to all…”. Pfffft….

  • Deborah in Montana says:

    Dear Jeanine,

    Please take time to read what Lisa wrote: http://lisabadams.com/2012/02/03/why-i-divorced-the-susan-g-komen-foundation-years-ago/

    Deborah

  • Gretchen says:

    Thank you! My daughter is keeping me posted on the outrage of pretense when it comes to supposedly supporting research.

  • Debbi says:

    My beautiful daughter-in-law’s equally lovely mother has battled breast cancer 3 times in the last 10 years. She was diagnosed with stage IV metastatic cancer last fall that had spread to her abdomen. Following 2 mastectomies, rounds of chemo & radiation, we were all hopeful that her original cancer would remain in remission but that was not to be. After her latest diagnosis, it took a lot for her to decide to fight again; she was reluctant as she knew what she was in for. But while her latest regimen of drugs has left her very weak and tired, she is again in remission. Our youngest grandchild is just 2 and there is another on the way so she felt she had much to live for. We don’t know if she’ll be one of those who actually beats cancer but we also know she likely will never accept treatment again.

    I have lost several friends to breast cancer…one as young as 19. It’s painful knowing there will be more that I know will also be lost.

    SBK has done a good job of writing the book on how to increase awareness of breast cancer. But it’s time to turn the page. There are millions of dollars raised every year that needs to be earmarked for research. Pink sports bottles, hair ties, spectator chairs, & footballs don’t cure breast cancer or come up with better treatments. It seems that they’re so wrapped up in their own agenda that they can’t see thru the propoganda fog. Their agenda isn’t serving the needs of those they claim to serve.

    SBK needs to change the trajectory of their organization & concentrate on the science of breast cancer.

  • nicole says:

    I had a bad experience with them as well. I tried telling my story but no one will listen. As of today I’m in remission due to God not my oncologist or Susan komen. I was homeless and blackballed all during my treatment. I would like to write about my story but I don’t have the finances. #allcancerpatientslivesmatter.

  • Tammy says:

    Do you really think SGK or the drug companies want to find a cure? This is a multibillion dollar industry! If there was a cure all that money would be gone! SGK pushes mammograms which has have shown to be ineffective with false results requiring additional mammograms to be repeated with radiation that causes cancer and is cumulative, followed by biopsies (which can potentially spread cancer if there is a tumor) and other invasive procedures. Drug companies push toxic chemicals that kill your immune system and cause more cancer (along with radiation treatments) instead of focusing on treatments that have no toxic side effects because they can make more money making people sicker and all the drugs to treat the side effects. They push Tamoxifen (which is a listed carcinogenic that causes triple negative cancer that is extremely hard to treat along with uterine cancer) and they push it in healthy women just because they have a family history or BRCA instead of prevention!

    None of these entities have any real education regarding prevention such as healthy whole foods nutrition, stress reduction, proper sleep etc. They are a joke! And as stated, they use none of those billions to help people who are going through cancer financially or supportively.

  • Lovely piece Lisa. First of all, I would like to commend you on your courage. Secondly, I too walk for Komen as I was told they really helped my great friend Bonnie Connolly with all the modalities aforementioned in your post including her care/ treatment at a time she really needed it. However, I am totally disheartened by your experience and expertise on the foundation. I agree that the pink hype is much ado about nothing and should be/ could be focused on so much more. For instance… How about the yellow ribbons????? Childhood cancer. No child should have to battle cancer in their childhood. And the most funding/support is received at a local level. What about that? Where is the help for the children? I am sorry you are going through this journey, I really am and have every empathy for you. I know many women like you. One of them has the type of breast cancer that can only be detected by a breast MRI, and typically when it gets to that point it’s Stage IV. People need to be educated on that! Again, I am sorry for your pain and can empathize greatly. Can you for one small moment just imagine what you have experienced, the chemo, the hair loss, the pain, the endless appts and procedures, medical expenses, and just imagine the beautiful little face of a child suffering from a disease that most adults can’t even deal with?
    My question is simple: Where is Childhood Cancers Susan G. Komen foundation??
    If you can answer, please feel free to email me.
    Also, please consider adding alternative treatment to your own care. Please do yourself a favor and look up:
    Optimum Health Institute, there are two locations. One in San Diego, CA and the other in Austin, TX. My mother has worked there for over 20 years. I would be happy to send you some info if you would like me to.
    Thanks for hearing me out, and for sharing your journey and your knowledge with us all. May God bless you immensely and keep you under His wing.

    Respectfully In Love & Light,
    Carolyn Connelly

    • Deborah in Montana says:

      Dear Carolyn,

      Have you ever been diagnosed with cancer or a life threatening illness? Why did you focus on children who have cancer? Seems to me your message is loud and clear. Adults should not complain as children are suffering.

      I hope you will take the time to visit Lisa’s home page ( lisabadams.com). You will learn much about Lisa. Lisa didn’t believe in God. She frowned on “fighting metaphors.” By the way, Lisa passed away last Friday.

      Congratulations! You are the first person to write to Lisa after her passing.

    • Carolyn,
      I wanted to respond to your comment because it appears that you are unaware that Lisa passed away last week.

      In regards to your comments about childhood cancers and SGK. I want to point out to you that the mission of Komen is to provide awareness, education and research for breast cancer and childhood cancers are not involved in their mission. There are other organizations that focus on childhood cancers, like the Leukemia and Lymphoma Society for instance. While I am not an advocate for SGK, I began my own non-profit to raise more funding to metastatic research.

      What society really needs is for the vast majority to stand up and take a stand against the “pink tape”. Until this happens, we will continue to circle in this cycle of getting nowhere, like a small hampster on a wheel.

  • Dorcas Stephens says:

    How much more awareness do we need? I worked as a mammography technologist for many years. I wrote grants to the Komen Foundation. I organized walks at our hospital. The groups that were getting the money were the Boys & Girls Club & Planned Parenthood. It was for Friends of Nancy Brinker. Small hospitals with needs for the latest technology were not getting any money unless it was for education. My Grandmother, cousin and aunt had breast cancer. I am disgusted with the Komen Foundation especially with the relationship with Planned Parenthood. I quit walking over 15 years.

  • Jeffrey Iredell says:

    Lisa,

    First, congrats on survivorship and a second for researching and making informed decisions on your giving back.

    While I did not fight breast cancer I am a survivor (now getting ready for my second go round), I too wanted to give back.

    For me, there were 3 choices, ACS, which you have already pointed out the pitfalls, LLS and the Lymphoma Research Foundation(LRF). After some research and attending events for each, I went with LRF. I knew exactly where money was going and they were very welcoming. Most people don’t know that these organizations are required to file a public annual financial statement breaking down their expenditure allocations. LRF spends around 6% on administration, 12-13% on fundraising and the rest is split nearly equally between research grants (at the university level, not to big pharma) and patient services and materials, ie workshops, booklets, financial help, etc. I encourage those looking to give back, regardless of the individual cause, to look before they leap.

    Thank you for the excellent article.

  • Anonymous says:

    This will open your eyes for anyone interested enough to read it, the history of the American medical establishment:
    https://app.box.com/s/dcnusza7i31v5sq87ct6o2chvhc8nbco

  • Staci says:

    For years our soccer club put on a tournament called Shoot For the Cure raising tens of thousands of dollars for the Komen foundation until one day Komen sent a letter saying we couldn’t use the name anymore. Our lawyer said we were OK because we were using the name way before it was trademarked. However, we decided they must not want our contribution very much, so our money now goes to local organizations supporting local families with cancer.

  • JoAn Huck says:

    I do not support Susan G. Komen organization. Abortion is WRONG. Trying to save a life while killing another, what are you thinking. Just another money making scheme.

  • Carol Covin says:

    I applaud your decision to set up a metastatic-breast-cancer-specific fund at Sloan-Kettering. They are a well regarded cancer center. I did not even know you could set up such a fund. All women will be helped by your generosity.

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  • Marieta says:

    We need to spread the word about the Komen Foundation and American Cancer Society.

    Lisa, I applaud you for your courage in making a difference to others. I agree 100% about komen foundation and even the ACS. None of them would even come up with a plan on how they can help people who really need help the most. This is what donations is all bout. Why focus on one thing only when you can spread your help to someone who’s fighting for it to survive and hoping to leave longer or have another chance to leave.
    A couple of months ago, my sister was diagnosed with stage iv breast cancer. Because of the aggressiveness of her cancer it went to her lungs. During that time, my other sister, my brother and myself was grasping for ideas on how we can raise money for her treatment. There is no medical insurance in the Philippines, so her only chances of getting the treatment is from our support. We send money every week taken from our paycheck which is still not enough for the treatment. We baked cookies and cupcakes to sell at work. Last week did our garage sale fundraising and raised about $814 which is good for one chemo treatment. Two weeks ago, I sent emails and made a call to Komen foundation asking for help to raise money for my sister’s treatment. I didn’t even get an acknowledgment from them at all. I called again and was told that there is nothing that they can do, so I was sent to call another number, again no response. This is the foundation that I was helping raise money year after year? wow. It sure was a disappointment. I know now that my money will never goes to them ever again not even a single effort to help out.

    • Deborah in Montana says:

      Hello Marieta,

      Lisa passed away, however her site still lives on!

      It would be wonderful if someone like you would contact 20/20 or OPRAH. Let them know about the Komen Foundation. Each day I try to spread the word.

      You need to learn more about Stage IV breast cancer. There is no cure. Some chose to use every possible means to extend their lives (Quality? I don’t know) and some chose to go with it. Both scenarios are extremely difficult.

      I completed chemotherapy a year ago (This July) and would NEVER do it again. Radiation in the breast is a walk in the park. They can radiate me all they’d like. Just no more chemotherapy. Knowing nothing about cancer I opted immediately for chemotherapy. Little did I know, there’s no way the chemotherapy can kill all cancer cells. The toll was not worth it. If I could go back in time, I would not have chemotherapy at all.

      Please consider writing a letter to the New York Times and Reuter’s who exposed the Komen Foundation. A letter to OPRAH might be well received. Little goes to breast cancer research.

      Most chemotherapy is the same stuff they’ve been using for the past 20-40. It kills cancer cells alright, but not all of them. Is it worth it? It’s a CHOICE.

      I don’t know how Lisa (Bonchek Adams) did it, but she did everything in her power including some experimental drugs/chemotherapies to try to extend her life. The word “difficult” probably does not even begin to describe what she went through.

      Good luck. So sorry about your sister.

      Deborah in Montana

  • Linda Boehm Johnson says:

    I find this very interesting. There is nothing that I dislike more is a society of money hungry people taking advantage of decent folks just by putting ads on TV. Example starving children, abused animals, abused elderly…..the list goes on. Now I know all of the afore mentioned situations do exists , but I’m also aware of the leaders of the organizations pay a hefty sum just to advertise it and then stick the money in their pockets.
    I too have breast cancer, my children are close to 50. So tell thee Komen Foundation to take ” my portion ” ( ha ha) and give it to the Children’s Hospital. Those little guys need a chance at living and making a difference in this world

    • Deborah in Montana says:

      Beautiful!

      One day scientists will cure all types of cancer. That will include cancer that affects infants, children, teens and adults. We MUST continue funding legitimate cancer research.

      With Komen spending only 15%-18% of all the take in, that is not likely to happen soon.
      Spread the word. Everyone should send the Komen Foundation $0.18 along with a letter.

      Lisa loved the hospital that was treating her and requested funds/donations to go there.

      Please check out standup2cancer.org

      100% of all donations go to research. They stay afloat by selling t-shirts and other stuff. The donations don’t go in their pockets.

  • my name is sharon wooten and i have breast cancer and i need some help with every thing i need some one i can talk to from time to time i am so scared and i dont have no support me all i have is my kids a 14yrs old daughter and a 29 yrs daughter that help me the best way they no how it is so hard for me and my kids right now and a little bit about me i am a 50 yrs old single mother trying to do all this on my and it is so hard for me so if you can help me please help me you can call me at 254-283-3938 or e mail me at sharonwooten@hotmail.com you can contact me at any time
    thank you
    sincerely your sharon wooten
    sharonwooten

  • Jennifer Stacey says:

    As a survivor who just finished chemo a month ago, ACS has helped me. Komen for a Cure did not help me with getting information, figuring out what questions to ask, navigating finding a good medical team and various other forms of support. ACS did. If I was worried at 2AM, I could have called them just to have someone to talk to. They provide Hope Lodge in various cities for patients to have free lodging when traveling for treatment. They have service that provides transportation to treatments when you aren’t allowed to drive. They offer so much to patients, so I choose to donate to them. Gilda’s Club is another good charity that helps patients.

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      I’m unsubscribing to Lisa’s blog as it is now so neglected that it’s being used for spam.

      Deborah in Montana

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  • Lois Klein, R.N., PHN says:

    Why are people espousing causes that mimic the efforts of the American Cancer Society, (ACS) rather than aiding that organization?

    ACS is a huge effort that stood the test of time. It is transparent, in that money given research projects is specifically listed, and many esteemed professionals in healthcare have been at its helm. I was involved in the educational programs and on the Division committee that selected the research programs, years ago. It is the best fundraising honest place to acquire true information about Cancer, Breast cancer in particular.

    When I discovered a lump in my own breast, through Breast Self Examination in 1974, I went to their support group and learned more about my disease through the educational resources there. ACS has been improving and keeps up with discoveries made through their efforts as well as other trusted schools of medicine.

    THE ONE THING THAT BOTHERS ME about information here in the USA, is why the inherent connection with ovarian cancer has been so hush-hush!
    In Canada and other countries, clinics attended by patients with breast cancer have signs above their doors that say:

    BREAST-OVARIAN CANCER.
    We are able to deal with that, yet some doctors still want us kept in the dark in that regard! That paternalism must stop. The entire process needs to be encountered by anyone who tests positive for any of the “markers” Thankfully having that test can be recorded in charts, now that insurance companies are no longer allowed, due to the Affordable Healthcare Act, to exclude coverage for those with prior history of any disease.

    When the test was done for a Canadian research study, I would not allow my positive result to cross the border into the USA where I’m a citizen and lived here for over 50 years. I earned from the study that as each generation of breast cancer survivors occurs, it appears at a younger age! My mother was 41 years of age when she had it. I was 35 years of age when I also was diagnosed with it. My ovaries and uterus were removed 10 years later, for preventive reasons. During that period of time, I could not get a gynecological surgeon to remove them sooner! Yet a movie star was able to have that done after her BRCA test showed she had a marker for breast cancer. Why is our medical system so reluctant to change?

  • donna says:

    You would think there would be a cure for cancer by now with all the money people have donated to cancer research etc……..why would they cure it….look at the money they get…or there is a cure but why would they say??

    • Kathy Boni says:

      Hi Donna,

      I run a non-profit for women that have lost their hair to cancer treatment – http://www.greenzinnia.org – I recently had the pleasure of visiting a cancer research lab at Mass General Hospital in Boston.

      The Dr. that I visited with showed a group of us his lab and his research and one of the things he said to us is this: If there was a cure for cancer, would the scientific community share that cure? Hell yes, for 3 reasons other than the obvious – it’s a cure for cancer.
      1) The scientist that finds a cure for cancer wins a nobel prize
      2) The scientist that finds a cure for cancer is the envy of all of his colleagues
      3) The scientist that finds a cure for cancer becomes extremely wealthy
      So, not noble reasons for wanting to find a cure but the reality is, the money that is raised for research is not funneled directly to these labs – it goes to big business but these scientists at labs such as the Whetstine lab at Mass General, are not receiving billions of dollars to line their pockets. They are hard working scientists who are excited at the possibility of finding a breakthrough and a cure – even if the underlining reasons are as human as the reasons that we all do the work that we do.

  • Melody Mertz says:

    I am fortunate, my cancer is under control and I am recuperating rapidly. My heart goes out to all of those cancer victims that are suffering every day and their families. Cancer is hard enough to deal with but when you have organizations that are supposed to be helping cancer patients but they are actually putting the money in their own pockets, it becomes a different story. I believe The Pink Fund to be one of the biggest scams out there. They have no heart. They claim to help cancer patients, but that IS NOT what they do with all of the money they are getting from people with a passion and good intentions to help those with this illness. I have a lot more to say on the subject but I’m not feeling well and so I will cut this short. I just want to say be careful who you donate to. The Pink Fund is not a legitimate organization. Don’t donate to this group. I am disgusted by the people who take advantage of the sick.

  • Maggie says:

    I have to tell my story only because of the bitterness and anger I have been feeling since i was diagnosed in March 2014 and now it being breast cancer month. I am a hard working 55 year old woman who has not had a cold in 25 years working since the age of 16 without having a one sick day. Paying a monthly premium for medical insurance now of 537 a month. I completed 6 rounds of chemo, 33 rounds of radiation, one year of herception after breast surgery still working every day even the morning before my surgery. I thought I had the best insurance, but then the bills started arriving – a half an hour Mri on my breasts insurance paid 750 dollars, I was billed 1239.00, pathology reports insurance paid 1200 I was billed 2200, I could keep going on and on, I paid what I could draining every penny in my bank causing me to get a few months behind in my every month living costs such as housing, car payment and insurance, utilities, etc. Again, I am a working woman who has at times worked 3 jobs at a time to provide my children. Myself and daughter applied at every organization for help too include Susan Komen The Pink Fund American Cancer Society all turned me down telling me I had to make under 400 to qualify and or be on gov’t assistance. Being a working woman living payday to payday did not count! So I was being pushed in poverty trying to pay the high costs involved to survive. I would sit in my treatments and talk with woman a lot from other countries who would tell me they had no costs involved with their care because of the help they received from these organizations and our gov’t. I was told by a volunteer at my oncology office that she visited Susan Komen office and was told they fund a lot of illegal immigrants care that come to our state. I was not asking for a hand out I was hoping there was some place that could help me negotiate some of my co pays etc or someone give me a break so I can back only feet financially – it did not happen. And because of the high cost of my medical care even with what I thought was good insurance we are preparing for bankruptcy. I do not believe there will ever ever be a cure for breast cancer, I believe there will be preventive education and treatments available. Even after breast cancer you are not cured, we now live with a condition that we must forever be aware of – and I say everyday I am grateful to be alive because I am my own hero. As far as any help from these organizations that advertise in the month of October for money I never received any help. The Sisterhood of America out of Texas paid a bill for me totaling 1200 to an imaging clinic I must go every year now. This is an organization for African American woman which I am not I will forever be indebted to them, and when and if I can contribute they will be the first one to receive!

  • Julie Klass says:

    Couldn’t agree with you !

  • Joe Loomer says:

    As the husband of a beautiful, formerly blonde Goddess who just completed chemotherapy and surgery for stage IIB invasive ductal carcinoma, I found your descriptions vividly mirroring my bride’s own experiences through these early stages of her treatment. God bless you, Lisa, and now I know a lot more about why my wife will not support Komen.

    I’d also like to apologize on behalf of Dave – not all of us men are that ignorant.

    God Bless

    Navy Chief, Navy Pride

    • I’m sorry for all that are going through cancer of all kinds.
      I have not had cancer but a dear friend was diagnosed with breast cancer and because I could not fix it, I did what I could – I signed up, I raised thousands of dollars and I walked 60 miles in a sea of pink (I hate pink). I did this 3 years in a row and I drank the Kool-Aid and wanted to make a direct impact so I started researching how I could do more for Komen and possibly leave the company I have been with for 15 year now, to work for Komen.

      While researching Komen, I found so much that I couldn’t stomach, between the high salaries, the wasted money and the help they didn’t give to women, I quickly realized this was not going to be the way for me to make an impact and so with the help and advise of friends, family and hundreds of men, women and families I met along the 180 miles I walked, I started a 5013c supporting women that have lost their hair to cancer treatment – all cancers.

      We are a 100% volunteer organization and 99% of all funds raised go directly to helping women with cancer. To those who think it’s not possible, it is, this is a full time job for all of us and we do this on top of our paid full time jobs. We spend many late hours doing research, filing grant requests and asking for donations from companies for auction items and we have been lucky to receive what we have. It’s not easy but it’s fulfilling and it’s important to us that nobody involved with us receives any compensation other than the good feeling of helping someone that is less fortunate than we are at this time.

      I’m saddened by Camilla, who said her mom was turned away – Please reach out to us, we can help and we do help. http://www.greenzinnia.org – TheGreenZinnia on Facebook and @Zinniagreen on twitter.

      We are a young 501c3 but we are not new to helping people, we do great work and we will continue to do great work. We recognize that cancer is costly and that families are making the choice between paying for treatment and paying household expenses and paying for hair doesn’t always make the cut.
      For those that think losing your hair to cancer treatment is a small price to pay – we say, you’ve probably never woken up to find your hair on your pillow.
      To those women that wear their bald head as a badge of courage – we say You go Girl !!!
      To those women who feel losing her hair to cancer is the most devastating part of cancer, next to her diagnosis – we say, there is help.

      To those that hate pink – it’s why were Green Zinnia (with the disclaimer that we have one day a year, one event where we can’t get away from pink and that’s our Annual Save 2nd Base softball tournament – we keep it pink because it was my first fundraiser when I started this journey to raise money for breast cancer and the same men and women that played in the very first tournament are still playing 4 years later and they love the name and I love them)

      I’m so sorry to read that Lisa has passed and I have found this site too late, to those that loved her, my heartfelt condolences to you.

  • Vic Olson says:

    I believe Komen has gone ‘incognito’. This year’s October campaign has brought out the pink ribbons. I suspect that’s a Komen ‘trademark’, and avoid them. I give directly to Planned Parenthood.

  • Vince says:

    Great post. I agree with the commenters discussing prevention. Cancer prevention is a million times easier, cheaper and more impactful than chasing an elusive cure. If we spent just 1% of money raised toward curing cancer on preventing it by alerting people to the most common causes, we’d save far more lives right now. And caring for those currently affected is also far more useful and helpful and trying to find a unicorn.

  • I love your poem. And you are correct, you will never be the same. I’m sorry. I’m sorry you will forever live with it. I’m sorry my sister died trying to live. I wonder, why? As we all do. But as of late I’ve learned, why not. Embrace all that is given. Especially, the hard times for it’s the only time you will (truly) grow! I’m sorry. That’s not what you really want…why?

  • Camilla says:

    I refuse to have anything to do with the Komen foundation. My mother, on the advice of her oncologist, reached out to them for a recommendation for local resources for things like support groups and good wig shops. She was told quite rudely that they were a fundraising group and didn’t have time to deal with people. Her oncologist was surprised,as he had always recommended them to his patients. On his follow up to them he too was told that they didn’t deal with cancer patients. The people were rude, condescending, and just obnoxious. This is only one run in that I’ve had with the people of this group. My $$ goes somewhere else. I wonder how Susan would feel today about this group?

  • Renee says:

    We donate to St Jude Children’s Research Hospital. Our son is a cancer survivor who was treated there. Their focus is on childhood cancers but the research they do is shared with many hospitals and doctors. Our son’s doctor discovered something relevant concerning a problem that was dealt with in his (son’s) treatment that he(dr)went on to share at a symposium of all types of doctors.

  • Debra Lynn says:

    There are so many comments on here, I had to skip to the end, reading several that are written. I agree with not supporting Susan G. Komen, 100%. But what I read from some women in these comments, like feeling sorry for yourself every day and being proud of it or being angry they have been diagnosed with and/or have endured the hardship of breast cancer, I feel very bad for you. Yes it is awful, as is any disease, yes it is hard to deal with if you obsess about it. I have been diagnosed with breast cancer that has metastasized as well as Chronic Myeloid Leukemia. I had a bi-lateral mastectomy and chose not to do implants. I take strong medications each day for both, which have major side effects. Yes, there are hard days and there are awesome days. I pray you will think about your attitude (I don’t mean that in a snotty way) as well as your thought process. Thinking and feeling so negative and angry all the time or even most of the time, only drains you more. There must be blessings in your life, something good to focus on. Family, friends, others that may need your understanding because they are going thru the same thing. If you see only bad things in your life, go do something to make your life better and more positive. Don’t depend on others to do that for you. If I keep my eyes on the disease, it wins. We are all going to die one day from something, no one is guaranteed tomorrow, so live for today. Don’t make others miserable that have to be around you. Love them, love yourself and love the life that is around you every day. Stop and smell the roses, notice the beautiful blue sky or the beautiful rain. Yes, I am an optimist and I never want to go back to my pessimistic ways and days of long ago. I have children and grandchildren and siblings who love me. I am blessed every time I see a new sunrise and thankful for it.

  • Please visit the Cowboys for Cancer Research website and Facebook page. We are 33 yrs old, located in Las Cruces, NM. Funds raised by this organuzation support cancer research for all cancers, at University of New Mexico Comprehensive Cancer Center and New Mexico State University. Funds are raised with a golf tournament, an Annual Team Roping, & an Annual Dinner Dance & Silent Auction. There are various groups who hold events which also support Cowboys for Cancer Research.
    Check us out… Join our team !
    Thank you!

  • I’m sorry for all that are going through cancer of all kinds.
    I have not had cancer but a dear friend was diagnosed with breast cancer and because I could not fix it, I did what I could – I signed up, I raised thousands of dollars and I walked 60 miles in a sea of pink (I hate pink). I did this 3 years in a row and I drank the Kool-Aid and wanted to make a direct impact so I started researching how I could do more for Komen and possibly leave the company I have been with for 15 year now, to work for Komen.

    While researching Komen, I found so much that I couldn’t stomach, between the high salaries, the wasted money and the help they didn’t give to women, I quickly realized this was not going to be the way for me to make an impact and so with the help and advise of friends, family and hundreds of men, women and families I met along the 180 miles I walked, I started a 5013c supporting women that have lost their hair to cancer treatment – all cancers.

    We are a 100% volunteer organization and 99% of all funds raised go directly to helping women with cancer. To those who think it’s not possible, it is, this is a full time job for all of us and we do this on top of our paid full time jobs. We spend many late hours doing research, filing grant requests and asking for donations from companies for auction items and we have been lucky to receive what we have. It’s not easy but it’s fulfilling and it’s important to us that nobody involved with us receives any compensation other than the good feeling of helping someone that is less fortunate than we are at this time.

    I’m saddened by Camilla, who said her mom was turned away – Please reach out to us, we can help and we do help. http://www.greenzinnia.org – TheGreenZinnia on Facebook and @Zinniagreen on twitter.

    We are a young 501c3 but we are not new to helping people, we do great work and we will continue to do great work. We recognize that cancer is costly and that families are making the choice between paying for treatment and paying household expenses and paying for hair doesn’t always make the cut.
    For those that think losing your hair to cancer treatment is a small price to pay – we say, you’ve probably never woken up to find your hair on your pillow.
    To those women that wear their bald head as a badge of courage – we say You go Girl !!!
    To those women who feel losing her hair to cancer is the most devastating part of cancer, next to her diagnosis – we say, there is help.

    To those that hate pink – it’s why were Green Zinnia (with the disclaimer that we have one day a year, one event where we can’t get away from pink and that’s our Annual Save 2nd Base softball tournament – we keep it pink because it was my first fundraiser when I started this journey to raise money for breast cancer and the same men and women that played in the very first tournament are still playing 4 years later and they love the name and I love them)

    I’m so sorry to read that Lisa has passed and I have found this site too late, to those that loved her, my heartfelt condolences to you.

  • Cierra says:

    I think they’re are a lot of people posting comments to this post that have no similar emotions as the women, and their families effected by breast cancer. Some people are not aware of the lies about SGK foundation, but instead of saying rude things about those people why don’t you post on other social media, or commit to telling others about their lies and deceit. They will never know if we don’t tell them. I never knew until recently. I was lied to and blindsided by the foundation as well. And as for the men and women saying that feeling sorry for yourself is no way to live, please tell me how you would feel going through treatments that changed your entire body and body appearance, everything from your hair to your breasts. Men: if you lost your testicles there is no possible way you would not have saddened thoughts, and thoughts that made you feel less like a man. You have no idea what the women effected by this disease endure everyday unless one of your loved ones has been touched by this cancer. So do not pretend you know how they feel, or say you wouldn’t feel the same way they do. Women: you also have no idea what it feels like for your body to go through those drastic changes unless you have been through, or seen it yourself. You, just like the men, would feel saddened thoughts, depressed thoughts, and maybe even “sorry for yourself.” That would be NORMAL. It would be unrealistic to go through such a drastic experience with no high emotions. Us as women need to educate one another on this mean and cruel disease, we need to stand TOGETHER, not make rude comments about one another or believe we know how one another feel. We also need to inform the men in our lives about this illness, and how to support and stick up for women as well.

  • Edward Reyes says:

    I have always been a supporter for the cure. My Mom passed of Stage 4 cancer which began with a break on her wrist. A year later my Mother had been ravaged by Cancer thru her entire body. 12yrs. Later I have no answers. So very much miss my best friend. Rest in Peace Mom. Love for ever Edward. :\

  • Susan J Adams says:

    Thank you Lisa for posting the original information. I too use to donate to SBK until I found that they were suing other charities. Many opinions here..much pain too. Thank you for enlightening us and blogging too.

  • Krista Soboh says:

    Are you aware of the overwhelming evidence that iodine prevents breast cancer. I personally take 20 mg Lugols to prevent. Apparently iodine induces apoptosis of abnormal cells working as part of the immune surveillance system. Want more info just email me for credible books on the subject. I support your arguments.

  • […] this year someone on my Facebook posted a link to an article they read about why they don’t support the Komen foundation and why others shouldn’t. […]

  • Meg and I'm surviving says:

    I read all of these comments and I’m both surprised by people’s misfortune and not surprised by the lack of support for and from Komen and ACS.

    I lost my hair and my breasts to cancer, losing my hair was traumatic, not being able to afford a decent wig and being turned down by Komen because they don’t help in that way was degrading, being turned away by ACS because they didn’t have any used donated wigs and a long wait list was disheartening.

    I didn’t want to go without but thought I had no choice and then someone told me about Green Zinnia, they are a non-profit that helps women with cancer and not just breast cancer.

    They gave me hats that were not just a knotted hat or a baseball cap but stylish, fashionable hats that I could bbe proud to wear when I dress up, they paid for a wig for me, a wig that I got to choice and be fitted for and that nobody else had worn.

    They made me feel good about myself and gave me back my confidence.

    I realize that getting a hat or a wig will not cure my cancer but it cured my self-esteem issue and it gave me the confidence to go out with friends and back to work without feeling like I was being stared at.

    My money is going to Green Zinnia because they care and because .975 of every dollar they raise goes to helping women. That’s higher than any other organization.

    They don’t take salaries, they don’t pay office space. They have partnered and bartered with others that have the same passion to help women get through one of the toughest and traumatic events in their lives and do so with dignity and confidence.

    If you are looking for a worthwhile charity that really makes a difference and truly cares ornif you need help, call them, they care. http://www.greenzinnia.org or 774-301-2014

  • Pat Calabrese says:

    Together, my wife and I raise well over $30,000 for SGK in a seven year period. Not much, but our time invested was immeasurable.

    When my wife came down with breast cancer and opted for a double masectemy, what I got from SGK for my troubles was a redirect on thier website to The American Cancer Society.

    This organization is a sham and it makes me sick when I see all the pictures of happy people in pink that think they are helping. It just breaks my heart.

    You wanna help? Raise funds, and go to a local hospital and ask for the accounts of women that have MASSIVE hospital bills from this disease… and then pay them off

  • Erica kearns says:

    I have heard similar facts as you stated. I am elated that you are suggesting giving to Sloan Kettering and have started a fund there, no hospital anywhere deserves it more or would be responsible enough to spend it wisely, better and very carefully. That is how they do everrything. They are a very well oiled machine, the pillar of efficiency. In my eyes, they are angels on earth. They care about you, body mind, spirit and soul. From the concierge to the cleaning crews, to the nurses, orderlies, drivers, doormen and of course the doctors, they treat people with the utmost respect, courtesy, kindness and dignity, going way beyond the call of duty. I will always love them for saving my life so i could be here to raise my kids. I had a fatal abdominal sarcoma, which had metastasized to several other places. I was told i needed to get my affairs in order. I didn’t know how much time i had left. They told my husband it would probably be only a few weeks, it had gone too far. Good thing they didn’t tell me that because i fought the hardest battle of my life, demanding whatever, and anything that was available, i would try. I underwent aggressive chemotherapy for almost 2 years. Each scan, things were shrinking. The following spring i was told i was cancer free. I will forever be grateful to them and support them any way i can.

  • Cindy says:

    My grandmother & aunt lost a breast to BC. Four aunts had BC. I myself lost a lung to Lung Cancer.
    When I am asked about my health I say “I had cancer” the first thing said “ohhh breast” with a sad face. I say lung.. next statement “oh you smoked” and the look is a face of blame.
    My lung cancer (carcinoid) had / has nothing to do with smoking. Not that it should matter! I was told I had 3-5 months to live..is my life worth less because of the words Lung Cancer.
    Around 250,00 are dying a year yes around 250,000. More 2 times women are dying from LC than BC.
    The only support LC gets from ACS is photos half dead people, aged people, headstones, & cigarettes. No awareness that non smokers or young people get it to.
    I’m sorry, I know this has nothing to do with BC but I want people to know..all it takes to get LC..is lungs. I want women to be aware of lung cancer & the odds of beating it are low.

  • Sarah says:

    A very thought-provoking article with a lot of good follow up. Thanks so much.

  • Lucy Gombash says:

    Hi Lisa , thank you for you very passionet imformation . I have also read and heard negitive press and facts about this organization . I was going to try this 3 day challange for the first time . But am very skeptical of where all this money is going . I stand with you and I feel SKO should address you concern for womens health . I applaud you streghth and bravery . I pray for you snd with you . God bless .

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  • Viki says:

    I am a two timer,I understand and can relate to all you’ve said.I was 35 the first time then was cursed again at 45,opted for a double mast.that time.I call my look frankenstieny(sp)?I can hardly bear to look at myself let alone any one else see me nude except for friends.but I have survived so far.I worked for Walgreen’s drugs for 20 yrs.Oct we sold paper flowers for a dollor,supposedly for BC awareness month,it all went to Walgreen’s corp. Being a survivor I was not comfortable with this scam and had my job threatened if I didn’t comply.I can be reached at 520 360 4559.long lives for us all that wish it!!

  • Owen Moore says:

    I too find the pink ribbons obnoxious and the foundation disingenuous. It’s all too fluffy. Thanks for sharing.
    My cancer is super rare and metastatic. I feel left out of the conversation every time someone ask me to donate or wear a ribbon.
    I’m not represented and am somehow not a part of the conversation.

  • Deanna Nelson says:

    I am a mom and only daughter of a mom who’s been battling different types of cancer (incl breast) since 2007. I began cancer research in 2009 and have very recently, discovered what I, and several doctors & neurologists, believe to be a MAJOR stepping stone to the cure against multiple types of cancer and other diseases as well. I have my detailed campaign on this link. https://docs.google.com/document/d/1Xudx5dkSJtUNLScRqZX6foP2lq3ToNrTjqP6LcR_ZNI/edit?usp=sharing
    I am shocked at how difficult it has been to get the word out. I certainly don’t need the millions which are raised every year by these cancer charities and I even mention that in my piece & I have just recently eliminated a mass in my own lymph nodes using my treatment. Read the link and spread the word. I have a limited amount of time. My mom is terminal, though my treatment has already begun to work. I need equipment to monitor her and the rest is explained in the description.
    Thank you and please consider being a part of this groundbreaking discovery!!! We’ve been waiting long enough!

    • Kathy says:

      STOP IT !!!! Stop trying to pray on those that need help and need a cure. You dare come on here asking people to give money to a go fund me account that doesn’t exist because it’s a scam. You claim that exercising your brain can cure cancer and then you have the nerve to ask people to give you money to buy medical equipment for your mother – how does this help anybody else? What the hell is wrong with you.

      Get off sites like this and leave honest people alone.

      • eileen carey says:

        Dear Kathy..i do not know about the “scam” here ..however because of vile organizations LIKE “Susan Koeman” i NO LONGER donate ..because SHE backs THE VERY corporations that MAKE the vile poisons that have BEEN PROVEN to CAUSE cancer..it is a very twisted game they play…adhering to the very companies that make the things that make us ALL sick..this is THE GAME they play..it is so wrong! Trust these “elites” eat the BEST Organic Foods & go to THE BEST Alternative Doctors & receive THE BEST natural cures etc… Just stop & think …MOST ALL “pills” & other things i.e creams etc..have some sort of petroleum product in them…THIS is foul ..they could use other things in “prescription drugs” OTHER than the VERY things that can & do make us MORE sick! Also ALL pesticides cause cancer !!! Yet these SAME big pharm companies ALSO own pesticide companies …i.e ORTHO …THEY MAKE Women’s “hormonal” pills creams etc..& make pesticides..CONNECT THE DOTS.. of course they ALL make BILLIONS on giving you “food” that has been sprayed then offer You “the cure” with THEIR prescriptions… of MORE poisons..do you not see ALL the law suits regarding these prescription drugs…the FACT is MOST ALL p.d. CAUSE HUGE adverse reactions…& even destroy organs as we age..ALSO they KNOW that there are safer more natural cures YET those do NOT yield the “profits” WHICH IS THEIR BOTTOM LINE!! They care NOTHING about the average persons Health..they ONLY care abut perverse “science” & MONEY & power to a point of INSANITY…i wish you the best..& i Pray everyday i am wrong ..HOWEVER sadly i know the statistics ..please look all this up for yourself..Blessings

  • […] Why I divorced the Susan G. Komen Foundation years … – *In October of 2012, the year I wrote this piece, I was diagnosed with a distant recurrence of my breast cancer… I have metastatic, incurable breast cancer. […]

  • Beverly Cooper says:

    Is the Susan G Komen Foundation still giving to planned parenthood today?

  • Olivia Odom says:

    How true your words are. The “After” is worse. I’m on Letrozole & the side effects are horrible. Chronic bone pain. Actually debilitating at times. Bones can’t absorb calcium unless I take boniva & guess what…..severe bone pain as well. I’m 52 & feel likea 90 y/o with severe arthritis. Lymphadema from having nodes removed unnecessarily. If I knew then what I know NOW. Radiation ruined me. I’ll NEVER be the same & I just had a lumpectomy. 9 cm seroma in the surgical site, is also very painful. I honestly don’t know if I can do this & suffer like thisfor 4 more years. I cry silently cuz I don’t want my son or friends to know how much pain I’m in. Yeah…….they put a “happy” face on being a survivor but it’s NOT. THANK YOU 4 writing this piece. I’m so glad I’m Not the only one who feels this way. Incidentally, I just made 1 year April 30.

  • Stephanie Swift says:

    Just want to let you know you are not alone in thinking the Komen Foundation is warped beyond repair. About 17-18 years ago we did an article for a school magazine I worked for and even then Ms. Komen was a huge disappointment. Her arrogance and premeditated greed were apparent to many. Komen has created a business from others’ despair and has consistently run that business as a misguided, cut-throat, misrepresentation in the form of a corporate machine. Her ethics do not give me hope, and I’m saddened that on top of everything else, cancer survivors have to have this “representation” which is no more than corporate greed at its worst. Good for you in starting your own charity, and creating an honest definition of hope.

  • martin says:

    i read your article and you don’t know how true it is for charity organizations. they create so much hype while some of them are set up just to create wealth for the executives!

    • Marieta says:

      I completely agree with you. I tried to reach out to multiple charity organization to ask for help on my sister medical expenses for her breast cancer and none of them even tried to reach me. I was disappointed, so I decided not to do any charity donation anymore .
      I decided to just do it my own and come up with anything to help my sister medical expenses. Not easy but I’m trying to support her.

  • Hannah ahzai says:

    Thank you for your insight. My mother and I decided to leave the SGK cult as well this past year. We want results, we want answers and also more resources. Enough is enough.
    Thank you Lisa you have confirmed everything we thought and you’ve also showed us that we are not alone.

  • Scott Moore says:

    Nice post. I found it searching for other people who are sick of all the Komen pink BS in the NFL.

    I used to donate to Komen until I found out they gave money to Planned Parenthood. I’ll happily donate to real non-profits supporting cancer research but not when they share funds with other, unrelated causes, especially when we’re talking about an organization responsible for killing more people than Hilter.

    • Kelly says:

      I feel the same way you do, I hate seeing the pink washing and knowing that they are collecting money from generous people who want to make a difference in the fight for cancer and then Komen and organizations like them are filling the pockets of Komen executives and special interest groups that benefit them.

      I found this organization, they work around the U.S. and they help men, women and children with cancer – one of the things they do is give wigs to those that have lost their hair to cancer, they do this at no cost to the person with cancer.

      They also do a resume service for anyone with cancer or anyone in the family that is changing jobs or reentering the work force after being diagnosed with cancer and again, that’s free to their family members.

      They work directly with research doctors and scientists to provide research funding and what I love is that they meet directly with these researchers and tour the labs so they know exactly what they are giving money to.

      The best for me – they don’t take salaries, all the money they raise goes directly to helping the cause. The women that run this were stay at home mom’s and when the kids went to school, they decided to start doing the Komen walks and when they found out about everything going on with Komen, they started their own organization and because they are stay at home mom’s, they don’t need a salary from the organization to do what they do.

      They’ve been doing this for more than 5 years now and they do amazing work.

      The organization is Green Zinnia – the website is http://www.greenzinnia.org
      Check them out if you want, they are one of the very few that I support – them, Jimmy fund and St. Jude.

      • Sarah says:

        I agree with Kelly, I follow this page because I found Lisa’s blog when I needed it most. I am a cancer survivor and I hate hate hate pink !!!

        I found Green Zinnia when I needed help and couldn’t get it from the bigger companies. They paid for me to have a wig, hats and headscarves so I could feel comfortable going out in public to my kids activities and not be stared at.

        They helped my husband revamp his resume and did mock interviews with him, by Skype because we don’t live in the area where the job coach was, he got a better paying job and I got the help we needed.

        They added quality to my life and my families life.
        I can’t Thank You Enough Green Zinnia for helping my family when we needed it the most and couldn’t get it from other organizations.

        We are not in a position yet to help this group financially because we still have major medical bills but when we are, I will be paying it forward to them because I know 100% of it will help other people with cancer.

        Love Green Zinnia and I’ll repeat the web page from above http://www.greenzinnia.org and I emailed them: greenzinnia@Comcast.net

        • Kathy says:

          Sarah !!!

          Thank you for bringing attention to Green Zinnia, we are so lucky to have met you and been able to work with you. You are a beautiful soul and I’m happy we could help you and your family.

          What Sarah isn’t saying is that she gives back in so many ways to so many people and we are so grateful for her help.

          Kathy

      • Kathy says:

        Thank you for the shout out Kelly !!!
        We loved working with you and glad you are doing well !!!

        Kathy

  • Cristina Garofalo says:

    When I was diagnosed with breast cancer 13 years ago I sought out this Organization only to be told they can’t help me since I was s stage 1 and didn’t need chemotherapy . I was s single Mom with 6 kids who needed me but they could of cared less. I never donated to them because of their attitude and coldness about my cancer. I am a survivor !!!!

  • Evvie says:

    When I was first diagnosed in 2000 I latched onto Susan G. Komen immediately. I wanted to be part of the group. I wanted to know that I wasn’t alone, that there was an organization that actually cared about us. I did my first Komen walk that year, and I did it the next year. It was then that I found out that an outside organization, and not Komen, was running the show. I later learned that the outside group took over 80% of the money that was raised for the walk. How could Komen have agreed to this?
    When I was diagnosed for the second time in 2011 I was terribly jaded. I was angry that I had the disease again and I didn’t want to be showered with pink ribbons. I just wanted to get on with it. Pink ribbons meant nothing to me, and they don’t now. The notion of the ribbon had been a simple one: to support those with breast cancer. Nothing more. As did LBA, I was disgusted that companies were using the ribbon for nothing other than profits. Hey, buy one of these 1,000 bracelets that have a pink ribbon on them! How about a pen? A tennis ball? A paperweight? The simple notion of the pink ribbon was gone. Susan G. Komen has become a voice for Nancy Brinker, not breast cancer.

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  • My sister Passed On August 13th 2016 she was my baby sister who I loved like she was my daughter she was a doll baby she asked for some help from Susan komen they wouldn’t help her with any thing money goes for the cause but it does nothing for the living she had to give up her home. her job called her two days after her surgery to tell her not to return to work they cared nothing for my sister she struggled for seven years living off her savings and finally the cancer took her I will never give to komen again the research will go on with out komen money because it is killing women l Miss my sister and will never get over losing her From her very sad sister. Patricia Brooks-Washington

    • Kathy says:

      Paticia,

      I’m so sorry for the loss of you precious sister.
      I started a non-profit for women with cancer. I wish your sister had been able to find us.
      None of the money raised goes to salaries or other compensation for anyone that works with us.

      All of our staff, myself included, are 100% unpaid. We do this because it’s important for people to realize that there is so much that women with cancer need and the large organizations spend so much money on salaries and benefits, and yes valuable research but we believe the hundreds of thousands of dollars given to executives could do so much more for women with cancer.

      We support the woman and the family and we don’t focus on any one cancer, we believe all women, all cancers deserve to receive needed support.

      Sincerely,
      Kathy Boni
      Green Zinnia, Inc

  • […] Why I divorced the Susan G. Komen … – I’ve been public about my criticisms of the Susan G. Komen Foundation for a few years. That criticism has not been easy; after all, I’m criticizing a huge … […]

  • […] Why I divorced the Susan G. Komen Foundation years ago … – I’ve been public about my criticisms of the Susan G. Komen Foundation for a few years. That criticism has not been easy; after all, I’m criticizing a huge … […]

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  • Hello!

    Dear Sister Lisa Bonchek Adams!

    Greetings from Jhumra City Pakistan!

    It is always good to hear from you. It is a great blessing writing you from Pakistan. I hope all is well with you this moment and meet you well in Christ. I know that you are doing great work in world-wide. How are you & your sound health? How are your Children’s? How is your wonderful ministry? How are your life and ministries activities? How your best friends, co-workers, relatives? Do you know your best friends, co-workers & your relatives are always in our heart, thoughts, eyes, daily prayers? We will continually pray to God increasing your life ministry activities & God provide to you much more money opportunity, prosperity, restoration, freedom build building for unsaved, unbelievers, hungry, thirsty souls, last sheep for word of God. Are you possible to stand, agreement with us very soonest God provide peace in Pakistan. This is our responsibilities and duties as a servant of Christ. I pray to God giving freedom, great vision, prosperity, restoration, Pakistani Christian people, through financially, emotionally, and spiritually and God knowing our patient, diligent, honestly, sincerity, loyalty, hard working for God’s purpose. I know that everyone is doing well there? Everyone is doing well here too?

    Today I want to inform you that I have found to you through visit your google-site? Please join me as my friend and fellowship with me. Do you know It is my heartily desire finding best friends from worldwide? I want to inform you that The PSSWS is each year at Christmas festivals distributing Christmas gifts programs among with poor, street-wondering, homeless, cold children & neglected widows, poorest Christian families in Pakistan. Do you know Worldwide, 570 million children live in extreme poverty, vulnerable to many factors that threaten their well-being. Children need protection, support and care at each stage of childhood to stay safe, healthy, learning and on track to achieve their potential. Please try to send even a little help to our Christmas distributing programs. The Christmas is. Coming soon. At this present we have no money celebrate Christmas distributing programs. We don’t have New & Secondhand clothes, shoes, food, medicine, primary, Sunday school materials & other necessary items. Please understand our very bad, dangerous situation and send us Christmas love offering gift. If you can our lord shall extempore many earthly and eternal blessings pour out your family & ministry? Please forward this message to your best friends, co-workers, relatives & religious denominations, organizations, ministries, churches, rich families etc?

    Today I will share with you needy people information these people are living in around the world 1.2 billion people live in extreme poverty on less than $1.50 a day. You can help change this. At least 80% of humanity lives on less than $10 a day. 22,000 children die each day due to poverty. And they “die quietly in some of the poorest villages on earth, far removed from the scrutiny and the conscience of the world. Around 27-28 percent of all children in developing countries are estimated to be underweight or stunted and 30 million children, largely because of slow progress in the two regions Asia & Africa. At least about 72 million children of primary school age in the developing world were not in school in 2015, 57 per cent of them were girls. Nearly a billion people entered the 21st century unable to read a book or sign their names. While the world has reduced the number of people 836 million in 2016, the target of halving the proportion of people suffering from hunger was narrowly missed.
    Problems Affect Half of Humanity

    * Some 1.1 billion people in developing countries have inadequate access to water, and 2.6 billion lack basic sanitation. * Some 1.8 million child deaths each year as a result of diarrhea.
    * The loss of 443 million school days each year from water-related illness.
    * Access to piped water into the household averages about 85% for the wealthiest 20% of the population, compared with 25% for the poorest 20%.
    * Millions of women spending several hours a day collecting water.
    * Number of children in the world 2.2 billion.
    * Number in poverty 1 billion (every second child
    * Shelter, safe water and health For the 1.9 billion children from the developing world, there are:-
    1. 640 million without adequate shelter (1 in 3) 2. 400 million with no access to safe water (1 in 5) 3. 270 million with no access to health services (1 in 7)
    * Children out of education worldwide 121 million Children

    Today I will brief to you every year at Christmas Festivals. I have planed Bible Distribution Programs among into with Sunday, primary school children and Prison & Jails, poor Christian family’s etc. There is one less person in the world without a Bible. Your sacrificial gift is already offering hope, comfort, and joy to a believer or to one who is searching for the truth. Millions of people around the world don’t have access to God’s Word, but you saw one person in need and decided to do something about it. Do you know I have most urgent needs of (200 Urdu Bibles) and (269 Christmas Gifts, New & Secondhand Clothes, Shoes, Food, Blankets, Toys, Medicine, primary, Sunday school materials etc). The PSSWS is feeding every year 65 widows and 25 poor Christian families at the Christmas Festivals. Truly at present we have urgent needs (269 Christmas Gifts Box) for Sunday school and (65 Christmas Gifts Box) for widows and (25 Christmas Gifts Box) for poor Christian families. We are brief to you urgent & necessary number of Gifts (359 Christmas Gifts Box). We have urgent needs ($3.00 x 269 Christmas box $807.00 US Dollars) and ($10 x 90 Christmas Gifts Box $900.00 US Dollars). Are you possible to send us money for purchased 359 Christmas gifts box in Pakistan? We know that 359 Christmas gifts box are very costly & high shipping expanses sending from your country to Pakistan. I mean this 359 Christmas box purchasing maximum cost & valueless in Pakistan ($1707 US Dollars) and maximum shipping cost ($200 to $300 US Dollars) for one carton only. We don’t waste God’s money via shipping expenses. But will request to you provide us (50 or 30 Urdu Bibles) Bible Distribution Program? There are so many Pakistani Christians who are deprived of having a cope of the Holy Bible of their own. As the Word of God is a must for a Christian, they do not have enough money to buy one for themselves. Even though many Christian organizations distribute free copies of the Holy Bible yet this is not enough because not all of Christian community can be reached. This is a wide scale project that needs to be undertaken by many so that at least Pakistani Christians should be able to get access to the Word of God. Secondly the price of the Holy Bible version in Urdu is out of budget for poor Christians. Seeing this, we have launched a campaign to raise funds for Bible Christmas Distribution Programs among such Pakistani Christians who on their own are unable to buy Bible. We urge all of you whose hearts are stirred by the Lord, to step forward and help us distribute Holy Bibles among poor Christians in Pakistan. One Urdu bible price is (01 Bible $7×50=$350 US Dollars) OR (01 Bible $7×30=$210 US Dollars). If you would you like to help provide us one time financial gifts and Love offerings price amount of 50 or 30 Urdu Bibles ($350 or $210 US Dollars). I know that at this time Holy Spirit allow or guide you and I hope very soon God give you opportunity, direction then you will consider our sympathetically request. Please do not hesitate to contact with us. I hope you can do transfer to our electronic funding account or (Western Union or Money Gram) please see information is given below:-

    1. Account-holder: Reverend Pervaiz Khokhar
    2. Account: National Bank of Pakistan Jhumra City Branch Pakistan
    3. Account Number: 11410-3
    4. International Swift Code: NBPAPKKAX02F

    I will request to you as your younger brother/servant of Christ from Asia Pakistan, please share this report, information and especially interfaith dialogue meeting monthly expenses needs with other ministries, churches, organizations etc. I know that at this time Holy Spirit allow or guide you and I hope very soon God give you opportunity, direction then you will consider our sympathetically request. Please send it to our ministry and if you are able to do something for the poor people please do it for our Christians who are living in Pakistan. We need your support financially and morally please do it for Jesus Christ not for men. We assure you we spent your all donations in the way of Jesus Christ, because those are not for Rev. Pervaiz Khokhar is only for Lord Jesus Christ. We think this is possible for you to minister our people from foreign countries.

    I will continually pray for your America Government, pray for your Protection, pray for your Revival, pray for your Spiritual Insight, pray for your American Nations, pray for your Those Desiring Children, pray for your Those Who Spread the Gospel, pray for your all best friends, co-workers, relatives, family members, your sound health, ministry, your all American people. Please send it to our ministry and if you are able to do something for the poor people please do it for our Christians who are living in Pakistan. We need your support financially and morally please do it for Jesus Christ not for men. We assure you we spent your all donations in the way of Jesus Christ, because those are not for Rev. Pervaiz Khokhar is only for Lord Jesus Christ. We think this is possible for you to minister our people from foreign countries. Please you specially pray for us that Lord Jesus Christ use us for His glorious work. If you really prayed this, the Lord will open your eyes and will bring someone in your path to guide you and teach you! May the lord bless you and keep & make His face to shine upon you and give you peace.

    I know that you have a great burden in your heart and you are a great servant of Christ and great American men. I know that you are a great, good faithful witness & disciple of Christ and God provide favor, protection as well as boldness in witness and God give opportunity you are willingness to sacrifice for others and especially for great Nation of God. First of all I will continually pray for you & your American Government, pray for your Protection, pray for your Revival, pray for your Spiritual Insight, pray for your American Nations, pray for your Those Desiring Children, pray for your Those Who Spread the Gospel, pray for your all best friends, co-workers, relatives, family members, your sound health, ministry, your all American people. I’m waiting for you positives reply from you. May God grant you a great harvest as you plant and water for Him!

    Yours Brother in Christ!

    Reverend Pervaiz Khokhar
    Chairman
    The Preaching Society & Social Welfare Services
    Mohallah Rasool Pura
    Street No 7
    Jhumra City 37700
    Faisalabad,
    PAKISTAN
    Mobilephone: +92-300-7914561
    E.Mail:pssws2017@yahoo.com

  • ms Inca Kola says:

    I’m sick and tired of hearing about breasts and I lost a dear friend because of a drunk driver!?

    • Kate says:

      I’m sorry for your loss, drunk driving is a choice that too many people make and too many are lost to it but this is not the place to say you are sick of hearing about people with cancer.

  • Karen McKee says:

    Does the Susan B Komen Foundation help a patient purchase cases of Ensure….
    Does the Susan B Komen Foundation help a patient with gasoline/transportation…
    Does the Susan B Komen Foundation help a patient pay for chemo/radiation….
    Does the Susan B Komen Foundation help a patient…….

    • Kathy Boni says:

      Green Zinnia helps those with cancer, all funding raised is used directly for this with cancer.

      We Started out supplying wigs at no cost to women with cancer and we are expanding the services we provide.

      We are always open to hearing from anyone withy cancer and their friends and loved ones so we know what areas we need to move towards.

      Our goal, after doing several 60 mile walks for Komen and learning what they don’t provide, is to help bridge the gap and give women and men with cancer the things they need.

      I’d love to hear from you.
      Greenzinnia@comcast.net

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  • Alice Jones says:

    My question is why do we get excited about the fight from Susan G Komen,when it was Henrietta Lacks whose cancer cells used for study?If you are still suffering from the disease,look up the aloe man and try the natural approach.this is not a joke.I was wiped out after chemo and he told me what would happen,that’s exactly what happened.I recovered my life

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  • […] Why I divorced the Susan G. Komen Foundation years ago. – I’ve been public about my criticisms of the Susan G. Komen Foundation for a few years. That criticism has not been easy; after all, I’m criticizing a huge […]

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  • Kat says:

    She died from her cancer you ass

  • niki pasricha says:

    Memorial Sloan Kettering Cancer Center is one of the charities you advocate for, the other is metavivor. I looked at the form 990 for both
    SALARIES ACCOUNT FOR MORE THAN 1/2 THE MONEY MSK raises
    SALARIES ACCOUNT FOR Zero or close to $0 on THE MONEY Metavivor raises.
    Admittedly MSK raises over 600 million a year whereas Metavivor only raises 1.5 million but spending over 347 million (over 50%) in salaries and benefits is way to high for a charity. The salaries posted exceed $2.5 million for their investment officer, other officers earn in excess of a $1 million.
    What am I missing?

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  • Barbara Harmon says:

    I am a 20 year breast cancer survivor in August of last year I was diagnosed with an Undifferiniated Pleomorphic Sarcoma of the soft tissue in my left thigh I had surgery October 2018 at Banner in Tucson great medical center it cost just $22000 only and only paid for the one night in hospital did radiation first for 7 weeks but half of my treatment denied by Humana because this company did not get Authorization on them still do not have a bill yet the cost was $49000 for that I have contacted them for weeks to see what is going on started radiation Jan finished March 25 then started chemo April and did 6 rounds finished June 19 I just got my chemo bill is only $500 dollars that I owe on that they gave me an advocate on this bless them because they care their name is Phoenix Cancer Institute Dr Steven Rosinski and his wife Kellie in Bullhead City Az the radiation company is Southwest Oncology many complaints about them I have reached out for financial help online but it says they do it against your life insurance I had to quit my job because I was to ill with this cancer so no life insurance all the money raised for cancer but where is the programs for us that have worked all ou lives paid our taxes raised money many years at work for Relay for Life but who helps us with financial help I am now 69 years old have now gone through all my savings and as soon as I can will have to find a job the worry every day is so hard. I also had a port put in for chemo it was $44000 paid nothing on that as the surgeon accepted what the insurance paid his name is Dr Cardone bless him now I am having to do physical therapy twice a week I have developed Lymphedema in my leg so delaying me trying to find work. Bless all of us struggling with this disease.

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