To mark International Women’s Day, we’re spotlighting the impactful work of AFTD Founder Helen-Ann Comstock, who created AFTD both to honor her late husband and to support other families impacted by FTD.

When Helen-Ann Comstock’s husband, Craig Comstock, was diagnosed with FTD in the 1970s and then died at age 50, she knew that her fight to increase FTD awareness and support families living with the disease was just beginning.

What began as a support group for persons impacted by Pick’s disease (as FTD was then called), in the late 1990s, has grown into a national organization supporting thousands of families impacted by FTD.

The organization’s roots first began to take shape after Comstock coordinated the country’s first Pick’s disease conference in 1999. “That was an important step because it was the only thing that had ever been done for Pick’s disease, and so people from all over the country came,” she said.

After the conference and her subsequent retirement from the Alzheimer’s Association, where she had been Executive Director of the Southeastern Pennsylvania chapter (now known as the organization’s Delaware Valley Chapter), Comstock rallied support from affected families and founding Medical Advisory Council members, creating a national organization for Pick’s disease and FTD.

“Here we were as this little group of seven or so people from around the country. None of us has a lot of money and none of us had a big name that anybody would know,” said Comstock. “I felt strongly about having a Medical Advisory Council with all of the best researchers — that would give us believability. It was tremendous to have the support of Drs. John Trojanowski, Virginia M.-Y. Lee, Murray Grossman, and others from around the country who jumped in and wanted to be a part of this.”

In 2002, Comstock opened a bank account for the organization with $1,000 of her own funds, created the initial mission statement, and began building what was then known as the FTD Society. Following the founding Board of Directors’ inaugural meeting in 2003, the organization’s name was changed to the Association for Frontotemporal Dementias, which later became the Association for Frontotemporal Degeneration.

Since its creation, AFTD has grown from an all-volunteer labor of love into a thriving nonprofit employing more than 30 full-time staff members. Currently, the organization has hundreds of volunteers from around the country working in support of AFTD’s mission as well as support from thousands of donors worldwide.

“I’ve been proud of how much [AFTD] has grown along the way and all of the people who have been involved who’ve been so enormously helpful and made it possible,” Comstock shared. “I am so thrilled with the wonderful staff that we have.”

Today, Comstock is still an active member of AFTD’s Board. While the organization has assisted many families along the FTD journey, increased national awareness about the disease, and raised critical funds in support of FTD scientific research, Comstock believes that the work she started 20 years ago is only just beginning.

When asked about the legacy she hopes to leave behind, Comstock shared that “because of what we’ve done, I hope that [in the future] we’ve found a cure or prevention for FTD.

“I hope that we’re able to make life a little easier for those still coping with FTD, and not just the persons diagnosed but also the family members who are having to be care partners and caregivers.”