Thursday, June 6, 2013

Thinking Pink

Recent news this week from the Susan G. Komen foundation shook the pink world for a bit.  The charity announced that it would not be continuing the famous 3-Day Walk in many major cities after this year, including in our very own Boston.  TheKomen publicists explain that the Boston market especially has been on a downward spiral for the past four years; essentially Komen can no longer afford to have the walk.

Basically, for those of you who are unaware, Komen has thousands of walkers each year who sign up in pink solidarity to walk and raise money – millions of dollars – for their non-profit charity.  Each person who signs up is on the hook for a minimum of $2300 in fundraising.  Boston alone has raised a pool of $3M+ year after year.
I, personally, have supported and donated to several people in the area with their walking endeavors in the name of pink.  I always have and I always will; however, now I am being a bit more selective in where my dollars end up.

This is not a Komen-bashing post whatsoever.  Without Komen, many of the research and advances made would not be available to the breast cancer community.  However, with all the recent ill-fated business choices behind Komen, and now the demise of the 3-Day Walk in several major cities, one cannot wonder if the public perception has caught on to the reality of true financial bottom-line of such vast pink corporate vehicles.

Komen is one of the better breast cancer charities out there, with a return of about 83 cents of every dollar donated being directed to the “cause”.  However, in 2010, Komen had an operating budget in the RED by nearly $4.5M.  Yes, $4.5M dollars.  See for all your inquiries about any charity and their financial reports.

Again, I do not wish to bash Komen.  I am simply making better choices about where to put my donated dollars as I have a limited amount to donate annually and honestly, I want more bang for my buck.

On top of that, tomorrow, June 7th, 2013 marks my five year (YES!  5 YEAR!) chemo-versary.  You have heard me say it before  in my prior post called Rebirth and you will hear me singing it from the rooftops on Friday!  I have dodged the cancer recurrence bullet (knock on wood) that has been on….my….tail……every three months for the past five years.  Only another fellow survivor will truly understand the weighted feeling of being followed by this little cloud of despair for so long.  As much as I tried to shoo this little cloud away from me, the uncertainty, the fear and the dread hung around close enough to be a humble reminder that my so-called NEW life, my rebirth was shrouded from that feeling of freedom until the remarkable five year date. 

In any event, about a year after my treatment wrapped up, I was courted by nearly every breast cancer charity out there because my story is indeed unique.  Sure, cancer while pregnant is not as staggering as one would think (about 1 in every 3,000), but it is still terrifying;  to have mother and child come out surviving and thriving is well, remarkable.

I knew I could not give myself to each and every charity, even though I wanted to.  I tend to give all of myself when I do give, so it was a matter of finding what charity was a fit for me and my personal beliefs.

I was shocked to find out that many of the larger breast cancer charities, not just Komen, were returning very little of the cents on the dollars to the actual cause itself.  One charity was as low as seventeen cents on the dollar!  Yes!  What that means is if you donated $10 to my Relay for Life walk in 2008, only $1.70 of your donation made it through to the cause itself.  Ouch.
I did not feel good about soliciting funds from my friends, my family and knowing that only a mere portion of the donation was contributing to the greater good.

Further, as I met more and more women who went through breast cancer (or continue to go through it), I realized that many of these larger charities denied patients the very services they claimed to provide.  Oy.  I was devastated.

Additionally, the superb medical team that saved my life – and that of my youngest daughter, my then unborn baby, shared with me the limited resources they have to improve the quality of care they provide to the sea of women struggling to survive out there.  Wait, what?

In my commiseration with a cancer advocate from the Worcester area, we realized the need to return to our local roots was great.  PINK Revolution was born. 

 PINK Revolution was created as a means to instill the old clich√©:  it takes a village.  Yes, we need to return to our roots and start caring for one another on a personal level.  Maybe it is easy to click online and make a donation to a breast cancer charity.  However, what about having a greater impact or at least knowing that online donation is truly being put forth to the cause in its entirety?

Yes, PINK Revolution is run by volunteers:  the Board of Directors is comprised of doctors, nurses and staff from UMass Memorial Comprehensive Breast Cancer Center, as well as an expert in the needs of women during/after breast cancer providing wigs, prosthetics, and so much more, as well as survivors of all ages, those that have lost a mother/sister and a very determined cancer advocate.  We all do this for no benefit to us other than to ensure pervasive change in the breast cancer world and making a difference for those out there suffering.
Yes, PINK Revolution is a work in progress since we keep operating costs to a bare minimum by soliciting volunteers for all of our needs (i.e. legal, financials, and more).

Yes, PINK Revolution has secured tremendous milestones in a few short years:  namely, joining with UMass to purchase a state of the art tomography machine, one of only five in the world, so that patients at UMass have access to better screening tools with less invasive processes; funding a published researcher investigating the pathways of triple negative breast cancer to identify possible better treatment options; funding better patient care so that those who have battled may live a better quality of life after cancer care; and providing Wellness Seminars to provide more comprehensive education and awareness for present and future empowerment in the world of breast cancer.

There are so many ways to help, it is ridiculous.  Sometimes it is not all about walks and simply donating money.  PINK Revolution  has set up meal schedules, rides, special liaisons for pay it forward type endeavors.  PINK Revolution is here for each and every patient, sometimes it is just a listening ear or an embracing hug, but perhaps it’s helping a patient advocate for better care or a sense of comfort.  Human to human, hand to hand, returning the power of touch – the village mentality is “in” again.

Help me celebrate my five years of being alive.  Help me hug not only the child I carried in utero while fighting for both of our very lives, but for my other two children and my husband who helped me in my darkest possible days.  I am here for the duration and only because of all the progress the pink world has accomplished in the past few decades.  I am eternally grateful, and yes, I owe my life.

Here's to living STRONGER and helping thousands of others to live STRONGER as well:

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