The Association For Frontotemporal Degeneration

Education and supportsupport - aftd understands the challenges that ftd presents to patients and their families, and works hard to develop unique resources and information that will improve quality of life for those living with ftd. Aftd staff responded to 4,203 helpline inquiries in fy25, a 7 percent increase over fy24. As of june 30, 2025, there are 118 aftd-affiliated support group facilitators leading 98 groups across the united states. Aftd awarded 659 comstock grants (travel, respite, and quality of life grants) to ftd caregivers and persons diagnosed. Education and information -- aftd collaborates with a growing number of partners each year to educate healthcare professionals about ftd, with a goal of speeding our way toward accurate diagnosis and effective disease management and treatment. Aftd's 2025 education conference, held in person in denver and online via livestream, drew 1,195 attendees combined. The conference featured experts familiar with ftd and the aftd community to comprehensively discuss content pertinent to people living with or affected by ftd, as well as healthcare professionals seeking greater understanding of this disease. Aftd offered 10 expert-led educational webinars, including one with the ftd disorders registry and two webinars that offered continuing education credits to viewers. Aftd also published four issues of the partners in ftd care newsletter for health professionals.

Advocacy and awareness - our community is leading the way to send the message that dementia is a multi-faceted disease that can occur at a young age and begin with symptoms unrelated to memory. Aftd is working hard to ensure that this message is heard in washington dc and other seats of power, where decisions about research funding and services are made. Aftd's advocacy action center mobilizes advocates across our community by providing clear guidance on how to take action in support of legislative, policy, and regulatory changes to improve quality of care and quality of life for people with ftd and their families. As of fy25, 2,259 individuals are raising their voices through our advocacy platform.