Frequently asked questions

Answered by a team member at Association for Frontotemporal Degeneration

• What is your mission?

  AFTD’s mission is to improve the quality of life of people affected by FTD and drive research to a cure.

• How are donations used?

  Donations in support of AFTD’s mission drive our work to increase FTD awareness, provide education to healthcare professionals, offer support to people who are navigating a diagnosis, advance research to bring forward early and accurate diagnosis and effective therapies, and foster advocacy to bring attention to the needs of people and families facing FTD.

  In collaboration with a growing network of volunteers, including our Medical Advisory Council and Persons with FTD Council, we provide help through resources such as our support groups, Comstock Grants program, HelpLine, and library of educational webinars. We bring hope by advancing FTD-focused research through AFTD Pilot Grants and Holloway Postdoctoral Fellowships, while nurturing engagement among community stakeholders and legislators through our Advocacy Action Center and awareness campaigns.

• What can be done with a $100 donation?

  Support Families: A donation of $50 can share vital information and resources with five families facing FTD.

  Educate Professionals: A donation of $100 can help distribute materials to healthcare professionals, for better diagnosis and best FTD care practices.

  Offer Support: A donation of $500 can fund a Comstock Respite, Quality of Life, or Travel grant for a person diagnosed or a care partner.

  Advance Research: A donation of $1,000 can support cutting-edge research initiatives to foster earlier diagnosis and the development of treatments.

• What progress has been made already thanks to your donors?

  With the support of our generous donors throughout fiscal year 2023, AFTD distributed 748 Comstock Grants – up to $500 each – to people currently affected by an FTD diagnosis, provided tailored guidance to 3,379 people who contacted our HelpLine, worked with 102 trained volunteer facilitators to organize and lead 77 support groups across the U.S., and welcomed 947 in-person and virtual attendees from 24 countries to the 2023 Education Conference. As of June 30, 2023, we are funding or co-funding more than 30 grants to advance research focused on understanding the underlying causes of FTD, discovering biomarkers for early and accurate diagnosis, and developing therapeutic interventions.

• What is the history of your organization?

  Founded in 2002 by Helen-Ann Comstock, a former care partner to her husband Craig who was diagnosed with FTD, AFTD has grown into the leading national organization focused exclusively on improving the quality of life of people affected by FTD and accelerating research to bring forward the first-ever approved treatments, and one day, a cure.

  Every day, we work to raise awareness, offer support, provide education, advance research, and foster advocacy. From our headquarters in King of Prussia, Pennsylvania, our staff of nearly 50 professionals collaborates with a national network of volunteers, including persons diagnosed, care partners, and healthcare professionals to deliver our programs throughout the country, providing support to all who face this disease.