Association for Frontotemporal Degeneration
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| Founder | Helen-Ann Comstock |
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| 41-2073220 | |
| Focus | AFTD envisions a world with compassionate care, effective support, and a future free of FTD |
| Location | |
| Services | Education, advocacy, helpline, research, funding |
Key people | Susan L-J Dickinson, Mitch Appleson, Penny Dacks, Sharon S Denny, Phillip Weichel |
| Revenue | $13,139,120 |
| Employees | 47 |
| Volunteers | 398 |
Formerly called | Association for Frontotemporal Dementias |
The Association for Frontotemporal Degeneration (AFTD) is a nonprofit organization based in King of Prussia, Pennsylvania, that works to support research on frontotemporal degeneration (FTD) while providing support and educational resources to people living with FTD disorders, their families, and medical professionals.
AFTD was founded in 2002 by Helen-Ann Comstock with assistance from caregivers and family members of people with FTD. In the 1970s, Comstock’s husband Craig was diagnosed with Alzheimer’s disease; however, a doctor later told Comstock that they believed he had Pick’s disease, an early term for FTD. Craig died in 1985 at the age of 50 from complications of his diagnosis.[1]
In 1999, Comstock worked with Lisa Radin, whose husband was diagnosed with FTD at 55, and members of a support group the two founded to hold the first conference for Pick’s disease in the United States. Comstock met many people at the conference who later became inaugural AFTD board members. In 2000, at a consensus criteria meeting held by the National Institutes of Health (NIH), Dr. Jordan Grafman of the NIH noted to Comstock the interest in a national patient-advocacy organization for Pick’s disease, and recommended she found one.
In the ensuing months, Comstock began reaching out to families affected by FTD to gather support for the organization. Additionally, Comstock recruited prominent FTD researchers to serve as medical advisors for the organization. In 2002, Comstock opened the organization’s bank account and donated $1,000 of her money. In 2003, at the initial meeting of the board of directors, the organization was named the Association for Frontotemporal Dementias, and all inaugural board members donated to the organization to establish its first funding. The name was later changed to the Association for Frontotemporal Degeneration to better reflect the modern understanding of FTD. The AFTD Medical Advisory Council was founded in 2004 with Dr. Grafman as an initial member. In 2005, the AFTD HelpLine was launched to provide resources and information to people living with FTD. Initially staffed by volunteers, the HelpLine is now staffed by licensed social workers. To directly assist families, in 2009 AFTD founded the Comstock Grant Program, which provides financial assistance to people living with FTD and their caregivers. The following year, the organization held its first conference to gather caregivers, medical professionals, and researchers to share updates in research and new resources.[2]
In 2017, AFTD and the Bluefield Project to Cure FTD co-founded the FTD Disorders Registry, a digital platform that collects data provided by people living with FTD, caregivers, and family members and makes it accessible to researchers. In 2020, AFTD chartered its Persons with FTD Advisory Council, providing a platform for people living with FTD to help shape the organization’s mission by sharing their experiences and insight.
In 2022, the organization hosted the inaugural Holloway Summit, an annual scientific conference that gathers academic and industry researchers, medical professionals, and people living with FTD to discuss specific topics in FTD research.[3] The Holloway Summit was started with support from the Holloway Family Fund founded by AFTD Board member Kristin Holloway, whose husband Lee Holloway, co-founder of Cloudflare, was diagnosed with FTD while she was pregnant with their child.[4]
On February 16, 2023, Bruce Willis' FTD diagnosis was announced in a letter signed by Demi Moore, Emma Heming Willis, and Rumer, Scout, Tallulah, Mabel, and Evelyn Willis. The letter was published in partnership with AFTD and appeared on the organization’s website. It had been announced previously that the actor was stepping back from film after being diagnosed with a form of aphasia.[5] Emma Heming Willis has continued to work with AFTD to advocate for awareness of FTD, and is set to accept the Susan Newhouse & Si Newhouse Award of Hope from the AFTD in 2026 for her work.[6]