I am honored to be selected by FORCE to be featured in the Volunteer Spotlight.
I am a retired Licensed Clinical Social Worker living in Richmond, Virginia. My mother died from triple negative breast cancer at the age of 65. She had an aggressive tumor and lived less than a year from her diagnosis. Three years later, in 1992, I was diagnosed with breast cancer at the age of 43. I was estrogen receptor-positive with one positive lymph node. My treatment included a mastectomy and chemotherapy. I have been fortunate to be a 33-year survivor with no recurrence.
Around 2010, I learned about the BRCA mutation, but I was initially reluctant to undergo genetic testing. Since I had been diagnosed 18 years earlier, and BRCA testing is predictive, it didn’t seem important to learn this information. My oncologist also did not recommend testing. However, after learning that there is a higher incidence of BRCA inherited mutations among Ashkenazi Jews, and out of concern for my children’s health, I decided to get tested. To my dismay, I tested positive for the BRCA2 mutation.
Receiving this result sparked an urgent need to learn more about the mutation and risk-reducing cancer strategies. The FORCE website became an invaluable resource, providing comprehensive information on hereditary cancer. I also attended FORCE’s support group meetings in Richmond and when I learned about volunteer opportunities, I chose to become a Research Advocate. After completing FORCE’s training program, I participated in many research studies by FORCE and other organizations to promote learning about BRCA.
In recent years, I have served as a Consumer Reviewer for the Department of Defense (DoD) Congressionally Directed Medical Research Program. In this role, I evaluate research proposals for funding by the DoD, representing the patient’s perspective. I share my insights with a panel of scientists, focusing on how the proposed research could impact patient care, such as quality of life and the potential toxicity of treatment. I also emphasize the effects of specific patient populations, such as individuals with BRCA mutations, patients with triple-negative disease, men with breast cancer, ethnic minorities and women serving in the military. This volunteer work has been very meaningful to me, offering the opportunity to contribute while learning from brilliant scientists at prestigious universities.
Sadly, my husband died last year after a long struggle with Dementia with Lewy Bodies. During his illness, I qualified to be a Consumer Reviewer for the DoD Alzheimer’s and Related Dementias research program. For both research programs, I had the privilege of giving the “Moment of Silence” presentation, which takes place before the scientific discussions. This presentation serves as a dedication to those who have lost their lives to the disease being studied. For the breast cancer program, I shared my mother’s struggle with the disease, and for the Alzheimer’s program, I described my husband’s decline from Dementia with Lewy Bodies. These moments allow researchers to be reminded of the human impact of their work as they continue their studies.
I also participated in the University of Virginia-PACE study, which focuses on people with Dementia with Lewy Bodies and their caregivers. The study aims to understand the experiences of patients as the disease progresses, how caregivers are impacted, and what changes take place as the end of life approaches. Over three years, I was interviewed intermittently, as researchers assessed my husband’s symptoms, the evolution of his care needs and the emotional impact on me, his primary caregiver, as he declined. The study is continuing, and I am looking forward to learning the results when they are published.
My volunteer work has been motivated by my commitment to the Jewish concept of Tikkum Olam, which is a call to action to repair the world. I hope in a small measure I have been able to do that. At the time of this writing, the current administration has paused funding for most medical research. I fervently hope that this funding will be restored for the benefit of our citizens and others around the world.
I thank FORCE for this honor and for the opportunities the organization has given me.