2002: AFTD is founded
When Helen-Ann Comstock’s husband, Craig, was diagnosed with Pick’s disease — what we now refer to as FTD — there were scant resources available to affected families. Not wanting other families to take the journey alone, Ms. Comstock took action. She founded AFTD, the first national FTD organization, in 2002. Dr. Jordan Grafman of the National Institutes of Health (NIH) spoke about how he encouraged Ms. Comstock: “I conveyed to Helen-Ann that with NIH, the squeaky wheel gets the grease.”

2004: AFTD’s Medical Advisory Council (MAC) established
Dr. Grafman became a member of AFTD’s MAC, which provided expertise and scientific legitimacy to the fledgling organization. Every MAC member has experience in FTD research or working with people affected by the disease.

2005: Start of the HelpLine, support groups, and AFTD research grants
Initially staffed by volunteers, the HelpLine is today staffed by three licensed social workers, delivering information and a sympathetic ear to thousands each year. There are now almost 100 FTD-focused support groups that meet either virtually or in person. Our first research grant in 2005 totaled $35,000. Last year alone, AFTD awarded more than $3 million in grants to support innovative FTD research.

2009: Comstock Grant program launches
One of AFTD’s most popular programs, AFTD’s Comstock Grant initiative distributed more than 440 grants last year to help persons with FTD and their care partners.

2010: First AFTD Education Conference
The Education Conference is a staple of AFTD’s work, convening hundreds of persons diagnosed, caregivers, care partners, researchers, and healthcare professionals each year to connect, learn, and engage. Please consider joining the 2023 Education Conference, either in person in St. Louis or via livestream, on May 5; registration opens in mid-January.

2012: FTSG meeting, Partners in FTD Care, and “AFTD-Team” launched
FTD research got a boost in 2012, when the inaugural meeting of the FTD Treatment Study Group (FTSG) convened leading researchers. Healthcare professionals benefited from the first issue of AFTD’s Partners in FTD Care. Reflecting growing momentum in our grassroots events volunteering, we established the AFTD-Team.

2013: FTD Awareness Week and ALLFTD launched
A boost for FTD awareness began in 2013 with the first recognized World FTD Awareness Week, the first volunteer Food for Thought campaign, and the launch of the first FTD national study – ALLFTD.

2017: FTD Disorders Registry launched
This online database is designed to empower participation in FTD research. Sign up at ftdregistry.org.

2019: Awareness in the media, AFTD Ambassador Program launches
FTD awareness increased nationally when CBS’s 60 Minutes aired a story on FTD. AFTD welcomed our first 12 volunteer Ambassadors.

2020: The Persons with FTD Advisory Council forms
The Council shares the voices of people living with an FTD diagnosis to help care partners, health professionals, and others with FTD to understand the disease in a new light.

2021: Voice of the Patient report
AFTD drew on the experiences from more than 1,750 people living with FTD to produce our Voice of the Patient report, which informs the U.S. FDA about the specific needs and priorities of our community.

2022: Inaugural Holloway Summit
Hosted by AFTD Board member Kristin Holloway, the 2022 Holloway Summit convened leaders in FTD science to discuss digital assessment tools for FTD.

Ms. Comstock reflected on AFTD’s early years, “I think we have been very fortunate, but we’ve also had a very hard-working Board and a marvelous staff,” she said. “I am proud of what we have accomplished and look forward to building on that. I eventually see a world where FTD is prevented – and no longer exists.”