Why I divorced the Susan G. Komen Foundation years ago

February 3rd, 2012 § 114 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.

§ 114 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

        • 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.

      • 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.

  • 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.

  • 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.

  • 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

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