FORCE recognizes our passionate volunteers by shining the light on their outstanding work throughout the year.
Having never heard of BRCA1, HBOC, FORCE, ABOUT, and a host of other acronyms a few years ago, I have now found my spot in this community, and want to help others find their spot as well. Although I don’t know where my HBOC journey will take me, I know that helping others via FORCE is definitely part of my destiny.
Robin and Cole are FORCE Pittsburgh, PA Peer Support Group Leaders and graduates of FRAT (FORCE Research Advocacy Training) program. Robin serves on the ABOUT Steering Committee and assists with the TeamFORCE program. Both previvors, they credit the local FORCE support group for not only providing the resources they needed to make informed decisions, but also provided them with the emotional support they needed to heal.
Debbie Setuain and Christy Thacker are our South Florida Outreach Coordinators. Read about their personal journies and how they became inspried to educate, empower, and support other families affected by this horrible disease so no one has to go through their journey alone.
I began my career in genetic counseling at a university clinic that saw families with all types of genetic concerns, including reproductive, pediatric, cancer and neuro. After many years in this setting, I was fortunate to be able to switch gears and join the InformedDNA team. When I made that change, I was also able to focus my career more on families with concerns for hereditary cancer syndromes.
Brian first became aware of HBOC as a sophomore in high school when a family member tested positive for the BRCA2 mutation. He began his involvement with FORCE when he volunteered at the 2010 Joining Forces Conference in Orlando, Florida. With a close connection to HBOC, volunteering for FORCE has been a transformative experience.
Mary Orloff and Brandi Forbes are FORCE Cincinnati/Northern Kentucky Outreach Coordinators. For years, we have worked together to spread awareness, to share vital HBOC information, and to be there for our local members.
I consider myself to be an incredibly lucky person — lucky to be alive, lucky to be in the first generation of women with HBOC who have a chance to live a normal lifespan, lucky to live in a city with some of best hospitals in the world, lucky to have found FORCE, and lucky to have the opportunity to help FORCE members make informed decisions.
Growing up, I heard many stories about my maternal grandmother's struggles with breast cancer. She lost her battle at the age of 37 when my mother, an only child, was only 16. My mom taught me at an early age about performing self-exams. She was a worrier and constantly reminded me to take care of myself.
I first learned about hereditary breast and ovarian cancer genetic testing more than 12 years ago, when my cousin who had breast cancer tested positive for a BRCA mutation. At that time, I was single and eager to ignore this information. But it was always in the back of my mind.
My wife, Ziva, tested BRCA1 positive in 2000 and this changed our lives. We embarked on a journey that led to reading the existing studies, interviewing breast and plastic surgeons, risk-reduction surgeries, recoveries, follow ups, more surgeries, and trying to get back to a new normal. We were a BRCA couple.
Family and sunshine warmed my kitchen table one Sunday morning in May of 2009. Shared laughter and stories were suddenly interrupted by a serious look on my uncle’s face: He informed us that his daughter, recently diagnosed with breast cancer, had tested positive for a BRCA mutation and that her genetic counselor had suggested our family should also be tested.
It was September 30, 2011, and my genetic counselor walked into the exam room. "The good news is that your breast MRI is fine," she said. I knew right away as I replied, "But I have a BRCA mutation."
I asked my 9 year old daughter to write what she knew about her risk of cancer. I know I am definitely at risk. I love my mom because she is brave and if anything ever happens I'll still have her.
The 2010 FORCE conference provided my sister and me invaluable information that helped us make important life-saving decisions.
When I was alone and scared, FORCE was my life line and being that life line for others has been such a rewarding experience.
Heather Fineman was 35 when her late mother was diagnosed with ovarian cancer.