Helen-Ann Comstock officially founded AFTD two decades ago, but the seeds for the organization were planted many years before that. Her husband, Craig, began experiencing FTD symptoms in the late 1970s; following his death, Ms. Comstock became executive director of the Alzheimer’s Association’s Southeastern Pennsylvania chapter. There, she recently told AFTD, “I was always saying, ‘Why aren’t we doing more about the related dementias?’” – a category that includes FTD.

She started a support group for Pick’s disease, as FTD was commonly called at the time, meeting in an office space in the Philadelphia suburbs provided by Dr. Murray Grossman of the University of Pennsylvania. In the late 1990s, the group’s members rallied around the idea of holding a conference entirely devoted to the disease, and in May 1999, the country’s first Pick’s Disease Conference took place in Philadelphia.

“It was kind of a fun time,” Ms. Comstock said. “We had a few Mummers come in and play, and we gave everyone little Liberty Bell favors,” she added, referring to two icons of the city. A couple hundred people attended – FTD families and researchers alike – many of whom Ms. Comstock and her fellow support group members personally picked up from the airport, in the spirit of all-hands-on-deck collaboration. “People wanted to help, and they did help,” she said. The conference “had a lot of heart to it.

“We included everybody in everything and got very positive feedback from people,” she further reflected. “One researcher who attended told me, ‘I’m trying to find a cure for FTD, and this is the first time I’ve gotten to talk to somebody with the disease.’ People really enjoyed that opportunity to mix.”

Spurred by the conference’s success, Ms. Comstock paid a visit to the National Institutes of Health to discuss the possibility of more federal funding for FTD research. She spoke with the neuropsychologist Dr. Jordan Grafman, who told her, “Until there’s a national FTD organization, nothing much is going to happen. So why don’t you start one?” Ms. Comstock founded AFTD in 2002.

Ms. Comstock was AFTD’s Board chair for the first eight years of its existence, and continues to serve on its Board today. “As the FTD field grows – and I do think we can take credit for a lot of that growth – we must make sure that we keep funding enough research, and keep putting time into supporting families and professionals – especially those in underserved areas,” she said.

Overall, Ms. Comstock said, “I’m thrilled with our Board members and staff. I can see huge improvements in our work. We are doing a lot.

“But,” she added, “there’s a lot more we can be doing, without losing our grip on our main mission: to keep supporting families and advancing research to a cure.”