AFTD volunteer Wanda Smith received Alzheimer’s San Diego’s Visionary of the Year 2024 award for her FTD advocacy and awareness-raising efforts, which date back to the 1980s.

Smith’s journey began when her mother, Sara Bridges, started to experience difficulties at work. Suspecting Alzheimer’s, Smith turned to Dr. Robert Katzman, MD, of the nearby University of California, San Diego, whose research and advocacy had brought greater national attention to the disease.

“He said, ‘You know, Wanda, I think your mom may have something different than Alzheimer’s,’” Smith said. “That began this long, winding journey to discover what my mom really had.”

Smith gathered genetic information from family members via blood samples and brain donations and waiting as scientists worked to better understand dementias like FTD and Alzheimer’s. The answer finally came in 2006, when Alison Goate, DPhil, identified a mutation of the GRN gene as the cause.

“Now fast-forward an additional 18 years, and now we have 13 pharmaceutical companies interested in solving that [misfolded] protein,” Smith said. “I’ve really been able to network and bring groups together, bring programs together to fill in some of the gaps that are out there. There are a lot of dementias out there, and as a family, we need to know which one we have.”

Speaking to Alzheimer’s San Diego, AFTD CEO Susan L-J Dickinson, MSGC, said that Smith’s role is someone who can “hold us accountable.”

“As someone from a progranulin family, she can speak with authenticity and urgency,” Dickinson said. “She can hold us all accountable to ensure we’re driving research forward as efficiently and effectively as possible. To me, Wanda embodies all the effective qualities of an advocate. As a stakeholder whose family is affected by FTD, she can speak with authenticity and heart, knowing that what she’s advocating for are things that really matter in these people’s lives.”

Ionis Pharmaceuticals chief development officer Richard S. Geary, PhD, emphasized Smith’s work to support persons diagnosed with dementia, as well as her advocacy work. In addition to serving on AFTD’s Advocacy Advisory Committee, Smith has been involved in advocacy related to dementia in California and nationally for decades, possessing relationships with legislators and a deep understanding of how the legislative process works.

“I think it’s more than a job for her; it’s her life,” Dr. Geary said. “It goes way beyond San Diego because she’s involved in advocacy to the Food and Drug Administration, to the scientists that are on the bench trying to identify a drug to help in this disease, to the caregivers that are caring for these patients.”

Betsy Hall, CEO and founder of the For Their Thoughts Foundation, said that Smith’s efforts kickstarted a process that has since reached the national level. She described that process as a domino track, where one small domino sets off a chain reaction that knocks down increasingly larger obstacles.

“If the 500-pound weight [at the end] is curing progranulin FTD,” Hall said, “Wanda’s that very first domino that started it all. To this day, Wanda is still walking along that domino line, making sure that each domino falls over, that the community gets bigger, and that we’re getting to that [weight] at the end.”

Are you interested in volunteering to raise awareness, advocate for change, and to support those affected by FTD? Volunteer with AFTD to make the journey easier for the next family or head to AFTD’s Advocacy Action Center to get involved in efforts to advance legislation focusing on FTD.