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.

You are never too young

Miss Venezuela, age 28, died of breast cancer today.  Twenty-eight. For anyone who doesn't realize how incredibly vital our Before Forty Initiative is, perhaps this will put it into perspective for you.


Former Miss Venezuela dies of breast cancer at 28
Published: December 19, 2011 4:51 PM
By THE ASSOCIATED PRESS


CARACAS, Venezuela - Former Miss Venezuela Eva Ekvall, whose struggle with breast cancer was closely followed by Venezuelans, has died at age 28.

Her family said Ekvall died Saturday at a hospital in Houston.

Ekvall was crowned Miss Venezuela at age 17 in 2000, and the following year she was third runner-up in the Miss Universe pageant in Puerto Rico. She went on to work as a model, actress and television news anchor.

She also authored a book, "Fuera de Foco" ("Out of Focus"), about her struggle with cancer, which included images by Venezuelan photographer Roberto Mata.

She told the newspaper El Nacional in an interview last year after the book was published that "I needed to send the message of the need for cancer prevention."

On the cover was a portrait in which she appeared with makeup and her head shaved. The book also included images of her while going through chemotherapy.

"I hate to see photos in which I come out ugly," Ekvall told El Nacional. "But you know what? Nobody every said cancer is pretty or that I should look like Miss Venezuela when I have cancer."

At the time, she was hopeful of overcoming cancer and wanted to write more.

Ekvall's family said in a statement Sunday that her remains were being cremated in Houston on Monday and that a service is to be held in Venezuela once her remains are returned to the country.

Ekvall said in a 2007 interview published in Venezuelan news media that although her mother is Jamaican and her father is American of Swedish and Hungarian descent, "I feel more Venezuelan than anybody."

She was married to radio producer John Fabio Bermudez and had a 2-year-old daughter.

Her death brought an outpouring of condolences from Venezuelans, including from some prominent artists and politicians.

One drawing posted on Twitter depicted her as an angel with white wings and a pink ribbon on her chest.

Ekvall's husband posted a photo on Twitter Sunday showing a close-up of his hand holding hers, resting on a bed, with the words "Always together ... I love you wife."

Updates from San Antonio

We will provide updates every evening of the 2011 San Antonio Breast Cancer Symposium.
Tonight's review:

2011 SAN ANTONIO BREAST CANCER SYMPOSIUM NEWS ROUNDUP

December 7, 2011
Today's abstracts reaffirm the benefits of using Zometa with endocrine therapy to prevent recurrence. There is now a test for recurrence risk in DCIS patients. The poor prognosis of overweight women is further studied. And, directly in line with our Before Forty Initiative, Hispanic women are diagnosed younger than non-hispanics and are more likely to develop a very aggressive, non-responsive form of Triple Negative Breast Cancer. They have a high mortality rate. Imagine if our Before Forty Initiative was able to help these women? We are working hard to do just that. Abstracts below. More to follow tomorrow.

Please go HERE for full report

Now it's Canada's Turn

Remember the "Task Force" that released the report last year that US women should not get early breast cancer screening, in fact, they should only begin at the age of 50 and then do it every other year? Now they are after Canadian women with the same deadly message...here
 
Our Before Forty Initiative needs your support now more than ever. Women's lives are at stake.
Help us help those who will be affected by the consequences of "waiting."


THE BEFORE FORTY INITIATIVE

An Easy Way to Help Us

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