Tuesday, March 27, 2012


Tomorrow evening, I will have the opportunity to see the much anticipated Pink Ribbons Inc.  It may not be much anticipated by you, but it has been much anticipated by me.

I am not breaking any new ground with this audience when I say that the ribbon has got to go.  It's not that the ribbon has to go, but the ribbon has been twisted into a tangled mess.  It is a noose around the neck of breast cancer and it's not the noose that is going to see the disease eradicated.  It's the noose that has literally left us hanging.  Waiting.  Waiting.  And STILL waiting.  For something.  Anything that shows promise of real change.

It would be unfair to say we have learned nothing during these past decades.  Unfortunately, what we have learned hasn't really led us to any meaningful progress.  Last week, I had the good fortune to listen to Dr. Susan Love explain how much has changed in our understanding of the biology of breast cancer.  In her usual engaging style and wit, through the use of metaphors in such a masterful fashion, she can take post doctoral, dry material and show all of us how and why certain information is relevant.

Later that day, I was enrolled in a seminar to hear Dr. Larry Norton at Memorial Sloan Kettering speak about advances in breast cancer research.  I knew I would be hearing much of the same information but he too, is an engaging speaker.  He is witty.  He speaks a mile a minute (and I thought I spoke quickly----at least I do when my brain is firing on all cylinders). He captivates an audience.  His talk was more of a Q&A and it will be available on the MSKCC website when the videographers can properly edit some of the redundant questions.  Senseless to listen to three people ask the same question using different words.

My point?  Everything about that pink ribbon screams "awareness" and we no longer NEED awareness.  We need education. We need research.  We need people who are willing to open their mouths.  We need to be fearless and relentless in our insistence upon change.

We need to JOIN together.  On Long Island alone there have to be hundreds of organizations, each hosting their own fund raising events.  It has become one giant competition.  Whose event will draw the most celebrities?  Which event will be the most prestigious?  Where did that group come up with such a CLEVER idea?

Will this approach bring us beyond the cure?  I don't know.  I can appreciate each community raising funds to help women within their community.  I can appreciate each organization that raises funds for research to choose where they want to send those funds.  It beats donating to a "middle man" so they can put researchers through the wringer with grant applications and adhering to certain guidelines.  Nothing like placing a set of stringent rules on a brilliant mind.  Let's boggle the brilliant mind with a mess of bullshit paperwork so (s)he is forced to spend precious research time on NONSENSE.

No.  I don't like that approach.  I like the idea of putting the money right into the hands of a researcher and saying, "Go research."  As long as we aren't funding stupidity...... "Do the women who eat Corn Flakes fare better than those who eat Rice Krispies?"  THAT is stupidity.  It is incumbent upon every single person who donates one cent in the name of breast cancer to know where there money is being spent.

We must become wise consumers.  We will try 15 different shades of red lipstick to decide which one best suits our coloring.  Yet, if something has a pink ribbon displayed, we will throw our money at it without making sure a donation is being made.  There is NO regulation of that pink ribbon.  Anyone can slap a pink ribbon on their packaging.  It's for awareness.  And you just got suckered into thinking some of your money went somewhere.  And it did.  It went right into the coffers of the manufacturer of the product you just purchased.  And now, You Are Aware.  After all, the pink ribbon raised your awareness, right?  You didn't know all about breast cancer, right?

Hearing, "it's for breast cancer" is nothing more than hearing WAH WAH WAH....  We need to ask questions.  We need full transparency.  If we can't find a way to self regulate, we may watch even more of those pink dollars wasted on a watchdog organization.  We are smarter than that, aren't we?  We can step in and do our part.  We can cut the noose and take the necessary time to see to it that our charitable donations are being used wisely.

I suspect I will be fired up after I see this movie and I suspect I may not have much to say tomorrow night when I get home.  IF this same post is up on Thursday, it will be due to the fact that (hopefully) there was a packed house and oh yes, I was invited to distribute information on behalf of Breast Cancer Action at the screening.  I was invited to speak.  I am thrilled I was asked.

Breast Cancer Action was one of the two charities that Rachel endorsed before she died.  I can think of no better way to honor Rachel, to keep her voice alive.  I promised her.  In our last exchange of tweets one week before she died.  I PROMISED.  And I promised myself on behalf of every woman who has died and on behalf of every patient with mets and on behalf of every healthy woman, I will be noisy.  I will be rebellious.  Stop the progression of disease, save lives and prevent this from afflicting the next generation.  My friends deserve to live.  They deserve to die of something ELSE.

And the next generation, my daughter?  I can't have history repeat itself.  I can't walk my mom's path.  I can't have my heart shattered.  Mom will be in the theatre tomorrow night.  We will watch together and see how billions of dollars were wasted during the course of the nineteen years between her diagnosis and mine.  Progress?  What progress??  I still hear her tearful plea, "Is this the legacy I left to my daughters?"  Just hearing those words was more than enough shattering for me.  

If you don't have your toolkit, download it here.  Download it now.  Take action.  And, to the folks at Breast Cancer Action, thank you for giving me a chance to be the person I promised I would be:  A Fearless Friend.

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