FORCE recognizes our passionate volunteers by shining the light on their outstanding work throughout the year.
Susan Davis, a research advocate and peer support group leader volunteer, has devoted over 10 years to making a difference for the HBOC community through support, education, advocacy, awareness, research and fundraising. After her breast cancer diagnosis and discovery of her BRCA 1 mutation, she researched her genealogy and created an extensive tri-fold display board in the shape of a family tree along with photos and details of 16 family members affected to show how a genetic mutation can devastate an entire family. Her passion is to empower individuals and encourage them to look at their own family tree, collect family health information, and share the information with others to pay it forward.
FORCE is honored to spotlight Jane Herman, one of two inspirational New York City Peer Support Group Leaders and a FRAT Advocate. Unbeknownst to Jane and her family, a BRCA2 mutation lurking in their genes caused the breast cancer that took the life of her mom. Today, its presence motivates her to raise awareness about such mutations, helping to prevent other families from enduring what hers went through because they didn’t know the mutation was there. Jane’s passionate volunteer actions not only honor the memory of her mother, but also contribute to the Jewish concept of “tikkun olan” – repairing our world.
Rosemary Ciotti is passionate about supporting genetic research and making sure that our community has a voice and is heard. She completed the FORCE Research Advocate Training (FRAT) Program and currently serves as the a FORCE liaison to the Society of Molecular Medicine and Medical Imaging (SNMMI) where she represents the interests of the HBOC community and recently spearheaded a successful patient education day in San Diego, CA during the 2016 SNMMI annual conference.
Teri Woodhull is a strong and inspirational woman who is deeply invested in educating others about resources available to help stop cancer in families. She refuses to live in fear of the “what-if's”. Instead, she chooses to live with joy and appreciation; and part of that appreciation is choosing to be an active part of our inspiring FORCE community! Teri volunteers as a Peer Support Group Leader in Minnesota, a FRAT research advocate, a Peer Navigator, a special projects and fundraising volunteer.
Dr. Marleah Dean Kruzel is an Assistant Professor in Health Communication at the University of South Florida, Tampa, FL. She studies patient-provider health communication and is currently examining genetics and risk communication in the context of hereditary breast and ovarian cancer. A BRCA2 previvor herself, Marleah is committed to translating her research into practice, which is why she volunteers at FORCE and maintains a blog called "The Patient and The Professor."
On December 7, 2015 we lost a passionate and valued FORCE Volunteer from Cleveland, OH. With much pride, Marybeth shared her experiences and expertise to help others in the HBOC community. We are so grateful for all of the time and effort she devoted to FORCE and the broader cancer community. Marybeth, you are irreplaceable to us and you will always be remembered. Thank you for making a difference in our community!
Rona Greenberg and Jessie and Dave Bushman make up the support team for the Northern Jersey FORCE group. They are all graduates of the VolunteerFORCE Academy and are certified as Peer Support Group Leaders.
Genetic counseling students from Arcadia University in suburban Philadelphia are a group of inspiring and passionate men and women who always jump in to assist FORCE at important events whenever needed.
What I love about FORCE is that all of the information is carefully vetted and expertly reviewed so you know that what you are reading is reliable. Being a healthcare professional, I appreciate and understand the importance of evidence-based and empirically tested information. While FORCE never makes recommendations for any specific treatment, it does give you the tools and information to make educated decisions about your health as it relates to HBOC.
After being diagnosed with the BRCA 2 gene mutation my genetic counselor had directed me to the FORCE: Facing Our Risk of Cancer Empowered website. I immediately took an interest in this organization. I knew that FORCE was an organization that I wanted to be involved with. FORCE provided me with knowledge when I felt lost or scared about something BRCA related. I am blessed to have this organization on my side.
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.