Friday, July 24, 2015

Last Tuesday marked the fourth anniversary of my prophylactic bilateral mastectomy (PBM) and reconstruction.  It was surgery that I believe saved my life.  FORCE: Facing Our Risk of Cancer Empowered has been equally life-saving in my BRCA journey.  If you're the least bit inclined to support this incredible organization during its annual fundraising campaign, I'd be grateful. The letter below provides addition information about this year's campaign and my ongoing involvement with the organization.  

July 21, 2015
Dear Friends and Family,
Thank you for visiting my FORCE fundraising page!  
Four years ago today, I underwent life-saving, life-changing, and life-affirming surgery that kept me in the hospital for five nights, including one in intensive care, and then at home recovering for more than eight weeks.  As tough as it was, I'd do it all again in a heartbeat.
Although asking friends and family to donate to a specific cause is not among my favorite things to do, I'm willing to do it to benefit FORCE:  Facing Our Risk of Cancer Empowered as part of its For the Children campaign, which is being undertaken to raise a total of $250,000 to cover a shortfall that resulted when a grant that was expected didn’t come in. FORCE is approaching the campaign using a grassroots methodology, and is hopeful that 1,000 individuals will raise $250 each, closing the gap created by the unrealized grant funding. I am one of those individuals.
I truly believe that I would not be where I am in my BRCA journey today without this incredible organization that is solely devoted to providing up-to-date information, resources, and support to the community of people who are at risk for hereditary breast and ovarian cancer (HBOC) syndrome. Because I have been exceedingly open and forthcoming about my BRCA mutation and the steps I've taken in the last several years to reduce my personal risk, I'm not going to retell my story here.  If you want to read about it, there are plenty of posts elsewhere on this blog.
I will say, however, that I am proud and honored to give back to FORCE as the solo volunteer peer support leader in New York City. In this role, I schedule, organize, and facilitate peer-to-peer support meetings on topics of interest to the hereditary cancer community; provide one-on-one support to members dealing with emotional and physical effects of their BRCA status; and manage regular communications to members of FORCE's NYC group.  Although we are volunteers, FORCE’s programs are not without costs – brochures, postage, conferences for staff members, and myriad other initiatives all cost money.  The investment, though, helps ensure not only that the latest information is readily available and accessible to anyone who needs it, but also that no one has to travel the HBOC journey alone.  FORCE is here for us, and we are here for each other.
In addition to my volunteer work with FORCE, I also speak and write frequently about BRCA gene mutations in an effort to raise awareness about their presence, particularly in the Ashkenazi Jewish community, where one in 40 individuals is a carrier (as compared with 1 in 400 in the general population), and the majority of these people are unaware of their carrier status.
Indeed, until five years ago, when my sister and I took the initiative to get tested after we lost our mom to exceedingly virulent  triple negative breast cancer (TNBC), we, too, were unaware of the presence of a BRCA mutation in our family. (Ironically, although my sister tested negative for a mutation, last August she was diagnosed with a small, but aggressive tumor, and thankfully has come through chemo, several surgical procedures, and ongoing antibody therapy (Herceptin and Perjeta) with flying colors!)
Although we'll never know how different our family's story might have been had we known about the mutation sooner, if my involvement with FORCE can prevent even one other family from enduring what we did because we didn't know about the BRCA2 mutation lurking in our genes, I believe some good will come from our experience and that my endeavors (and my mom’s death) will contribute in some small way to the Jewish concept of tikkun olam – repair  of our world.
Because FORCE has been – and continues to be – a tremendous blessing to me and to so many others, I would be exceedingly grateful for your support during this important fundraising campaign.  
Thank you...xoxo,
~ Jane.