Our History

Hand holding photo of founders of AFTD
AFTD’s founding Board members at their first meeting in January, 2003. From left: Fytie Drayton, Joseph Becker, Joyce Shenian, Jordan Grafman (advisor), Tess Parrish, Helen-Ann Comstock, Lisa Radin, Kent Jamison. Founding Board members not pictured: Lawrence Shor, Robert Kemp, Robert Potamkin.

Helen-Ann Comstock founded AFTD in 2002, with a personal donation of $1,000.

Drawing upon her experiences as a caregiver for her late husband, who had FTD, she collaborated with a team of dedicated FTD care partners and medical professionals to establish an organization focused on advancing research for FTD, providing information, education and support, and raising awareness of this rare and uniquely devastating disease.

In the ensuing years, AFTD has grown from an all-volunteer labor of love to a thriving nonprofit employing 20 full-time staff. The organization has emerged as a leading international expert on FTD and young-onset dementia, with a dedicated Board of Directors, a thriving volunteer network, and medical and scientific advisers representing the foremost experts from around the world. AFTD has received generous foundation and donor support, including the David Geffen Fund, contributions from which are providing $20 million in support over a 10-year span, alongside the support of thousands of donors and hundreds of volunteer fundraisers.

cover of A Vision for Hope: AFTD Early Years

Learn more

You can learn more about AFTD’s founding history in this publication:
A Vision for Hope: The Early History of the Association for Frontotemporal Degeneration [PDF]