Thursday, February 9, 2012

No Surprise for Us About Komen

What can be said that has not already been said?  The blogger army of realistic women, that is, women who really know what breast cancer is, has spoken. For those of us at the No Surrender Breast Cancer Foundation, The Pinkdom's action of shifting hither and yon regarding Planned Parenthood Funding is a blessing. Finally, the pink gel that has been covering the spotlight focused on their activities has finally brought into clear focus who and what they are and have always been. Activist bloggers have been screaming this from the rooftops for years. Now, at long last, The Emperor has no ribbon to hide behind.

Was I surprised that they turned away poor women from screening? No. They have denied our 501c3 a small grant to help us go to under-served areas where we educate young women about their increased risk of developing the aggressive form of the disease, Triple Negative Breast Cancer. Simply stated, they told us that our program of outreach to the less fortunate did "not fit their guidelines." This was particularly true because our program, The Before Forty Initiative, targets young women, under the age of forty. Komen informed us that they do not believe screening should begin until well after forty. Even though their own website states that young women have a greater chance of developing TNBC and specifically mentions African American women - the very women we seek to help. They also fail to mention that Nancy Brinker got her first screening mammogram at age 37. The message? What's good for Ms. Brinker is not necessary for young African American women.

Other large organizations do similar things. They take the pulse of the populace and then suddenly change their focus to fit in better, in order to raise more money.

Whether you agree with the benefits of early detection or not... whether you are pro-life or pro-choice... it doesn't matter. The Komen Pink Kingdom has, in the words of my grandmother, become too big for their britches.  And as such, they lost their focus. Perhaps it got lost in all that pink schmaltz.

I will state, again, clearly and distinctly, what WE stand for and have always stood for since the beginning: We get you through your breast cancer. We teach you about your disease so you can fight it with all the knowledge you need. We take those terrifying first few days and create warriors. We have up to the minute reports on the latest treatment for both early disease and metastatic disease. We spend countless hours educating an entire population of women who mistakenly were led to believe that they are not at risk for breast cancer. We advocate early screening, but don't think mammography is the answer. We believe in MRI's and ultrasound technology. We teach you to never give in, never give up and never surrender to this disease.

Do we get funding? Some. But, to be perfectly honest, we are not very good at fundraising. We simply don't have the resources for expensive campaigns. We have an all volunteer staff of survivors. We were founded by a two-time survivor and if you, too, are a survivor, you know that surviving alone takes up so much time that a choice is made: Spend our time actually helping the women who need us? Or, spending our time thinking up clever ways to incorporate a piece of polyester ribbon into a worthless product to raise money? We choose helping other women and can sleep at night because we know that we have helped someone else sleep  rather than be up terrified and alone. We have taken her under our wing and shown her that she will get through tomorrow and next week and next year.

As the founder of the No Surrender Breast Cancer Foundation, I am damn proud of the work we do and the incredible women and men who make it happen. We may not be billionaires, but we knew we wouldn't be when we decided to give everything up to form our non-profit. Isn't that what non-profit is all about anyway? Perhaps Komen should consider going public, admit they are not truly a non-profit, incorporate themselves like any other huge organization and then put an end to the scrutiny.  Personally, I don't have time to worry about how they should run their organization. I have too many  emails I have to respond to from newly diagnosed women who wrote to me directly.

Komen, a big pink mirror is being held up to you. Do you like what you have become? Is it really what breast cancer is about? If you answer yes, then we must have had a different type of breast cancer. Mine was hell and I am still living with the fallout. But at least I know what's important in this battle.

To every woman battling breast cancer, waiting for treatments to begin, or living with metastatic disease, this post is for you. And so is No Surrender. Any time, day or night. Completely free for your use and always will be.