May is Melanoma and Skin Cancer Awareness Month. In support of the awareness efforts, the Melanoma Research Program (MRP) will run a series of features this month highlighting some exciting new initiatives from the program and the people without whom the MRP could not achieve its Vision. The first of this series is the story of J.B. Ward, an MRP Consumer Peer Reviewer since the program’s inception in fiscal year 2019, in her own words.
Melanoma Research Program Consumer Reviewer
I was 31 when I was diagnosed with mucosal melanoma, a rare and very aggressive form of melanoma seen in only a little over 1% of all melanoma cases. Mucosal melanoma is thought to be unrelated to sun exposure, and any other precipitating factors are unknown. The rarity of this diagnosis meant that in the beginning, and throughout my care, there was a large amount of uncertainty regarding my treatment and prognosis. As such, I had to become a strong self-advocate, taking the time to seek multiple opinions and explore unique therapeutic options. The treatments that I ultimately completed included surgery, biochemotherapy, immunotherapy, intra-operative radiation, and preparation for a clinical trial involving tumor infiltrating lymphocytes (a form of immunotherapy). After a year of relentless pursuit to achieve “no evidence of disease”—a year when the battle to extend my life became a full-time job—we celebrated the fruits of the creativity and determination of my medical team when an additional post-treatment surgery left me with no remaining evidence of disease—a status that I have maintained for nearly 5 years.
My father is a retired Air Force lieutenant colonel, and I grew up on multiple Air Force bases before settling in Kentucky. I majored in both art and psychology at Centre College in Kentucky and ultimately pursued a Ph.D. in clinical psychology. I worked as a psychologist at the U.S. Department of Veterans Affairs in Baltimore as part of my clinical training, with a focus on health psychology and chronic illness. After this I moved to Nashville, Tennessee with my husband and infant son just prior to being diagnosed. As my own fight with mucosal melanoma subsided, I turned to melanoma advocacy organizations to help reorient that energy toward supporting the greater community of mucosal melanoma patients. I learned that there are many, many ways to advocate through these wonderful organizations and that the ideal scenario is to find ways to advocate that suit your unique strengths and interests. To date, I have been involved in numerous efforts that include media outreach projects to increase awareness of this rare melanoma, events to promote awareness and grow a mucosal patient community, and patient advocacy within research and clinical trial development. Most recently, I am serving on the board of an in-development rare-melanoma registry that will facilitate shared knowledge and research, with the goal of providing better outcomes for patients with rare melanoma diagnoses.
When I was first approached by the AIM at Melanoma Foundation to apply to become a consumer reviewer for the Congressionally Directed Medical Research Programs (CDMRP), I was intrigued. In particular, because of the important role clinical research played in my own survival, and also because of my research-focused education and family military background. After learning that, not only does the Department of Defense allocate funding to public illnesses, but that there was a new melanoma research-specific program (MRP) dedicated to funding melanoma research, I was absolutely thrilled. Though I was a little apprehensive about how my role as a survivor/patient would be viewed within the scientific community, I have discovered that the CDMRP, and the scientists they recruit as reviewers, have shown me nothing but respect, validation, and genuine gratitude for my input.
I have found my background knowledge of research is helpful for my work with the MRP. However, I feel that my personal experience as a patient, and the insight gained from interacting with other patients and caregivers, have been the most important sources to draw from as I evaluate the research applications for their potential impact on the melanoma patient community. Working with the MRP has been an incredibly rewarding opportunity to meet and interact with top researchers in the field, be one of the first people to view up-and-coming melanoma research ideas, and, at times, advocate for patients when there are concerns about an application. Serving as a Consumer Peer Reviewer for the MRP has proven to be a wonderful fit for me and my desire to continue fighting for improved outcomes for people diagnosed with melanoma and to find answers for the many unknowns in mucosal melanoma.
During the pandemic, I decided to retire my clinical psychology license so that I could be flexible for my son, now in elementary school. It has also enabled me to focus even more on my rewarding advocacy work, including serving as a consumer reviewer on virtual CDMRP panels. I find that serving from home means less impact on my parenting time and more access to the comforts of home. I am also now working as a charcoal portrait artist (to check out my work, see Instagram: @jbwardart) and I love to spend time in nature with my husband, son, and our dog.
Last updated Thursday, May 26, 2022