Pennsylvania · Nonprofit
THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION
THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION (Pennsylvania) receives grants from 193 organizations whose IRS filings report $29,634,609 to it, the largest being THE DAVID GEFFEN FOUNDATION ($7,000,000). 83 of them have funded it in more than one year.
- Revenue FY2025
- $14M
- Funders on record
- 193
- Grants received
- $30M
- Net assets
- $57M
What The Association for Frontotemporal Degeneration does
Mission
Promote and fund research into developing better diagnostic processes, therapies, and cures for frontotemporal degeneration (ftd); provide information, education, support and advocacy to persons diagnosed with ftd, their families and caregivers; (continued in sch o) educate physicians and other health professionals about ftd and how to improve patient care; bring about greater public awareness of the nature and prevalence of frontotemporal degeneration and the needs of those who are coping with it; advocate with public officials to promote public and private programs that provide appropriate, affordable and high-quality, long-term health care and social services.
As stated on its FY2025 Form 990.
Programs
Research - each year aftd invests in the science that will drive discovery and development of accurate diagnostics and the first therapeutics for ftd. To that end, aftd awarded eight grants during fy25, including three pilot grants awarded through the aftd pathways for hope pilot grant program.aftd delivered three awards through the accelerating drug discovery program in collaboration with addf. Dr. Jeffrey rothstein of johns hopkins university and his team will use the award to evaluate a novel therapeutic to correct a problem at the heart of ftd associated with the accumulation of the protein tdp-43.(continuted in schedule o)aftd awarded three holloway postdoctoral fellowships - one to a researcher working on a project targeting contributions to white matter hyperintensities in bahavioral variant ftd, another to a researcher working on leveraging a large grn family to identify resilience factors in ftd, and the last to develop an educational support group program for latino and hispanic caregivers. Aftd also awarded a clinical research training scholarship to investigate the molecular role of specific inclusions in ftd-als, funded through the generous support of the holloway…
$3,809,685 spentof which $1,657,793 as grants$439,004 earned by the program40% of program spendingEducation 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…
$2,351,223 spentof which $284,926 as grants$2,068 earned by the program25% of program spendingAdvocacy 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.
$3,300,365 spent35% of program spending
The 3 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $9,461,273.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2020 to 2021, from $24M to $45M (+87%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2021 1%. Grants only. Government contracts and fees sit inside program revenue.
86% of THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION’s revenue is contributions — more reliant on donations than three-quarters of its peers (7% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 9 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Susan L-J Dickinson
Chief executive officer
Board chair
Rita Choula
Chair
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 24 funders to 66 funders, grant income rose $496k → $7.3M.
34 of 193 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 37% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION’s funders (the co-funder graph). Top 30 of 193 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION has a broad base — no single funder exceeds 24% of grant income, and it takes 3 funders to reach half.
the vertical line marks half of all grant income — 3 funders to its left
42% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION.
Largest funder’s share by year: 2017 23% · 2018 70% · 2019 57% · 2020 53% · 2021 46% · 2022 31% · 2023 34% — growing more concentrated.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
35% of THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION's funders are still giving 3 years after their first grant; 43% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION draws 100% of its grant income from funders outside Pennsylvania, across 27 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $11M arriving through sponsors registered in 21 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION runs a healthier operating margin than three-quarters of the 2,969 health nonprofits its size.
this organization peer median middle 50% of peers· 2,969 health nonprofits $10M–$100M, FY2025
Organizations like THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Pennsylvania
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
82% of spending goes to programs.
Governance
Public support
59%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 38 states
Part of a family of 1 related entity
- The Ftd Disorders Registry LLC · exempt
Screen this organization
A dated, signed PDF of the compliance screen for THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION?
- THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION (Pennsylvania) receives grants from 193 organizations whose IRS filings report $29,634,609 to it, the largest being THE DAVID GEFFEN FOUNDATION ($7,000,000). 83 of them have funded it in more than one year.
- How many funders does THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION have?
- IRS filings report 193 organizations giving $29,634,609 in grants to THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION, 83 of which have funded it in more than one year.
- Who is the largest funder of THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION?
- THE DAVID GEFFEN FOUNDATION is the largest funder on record, with $7,000,000 in grants. The full list of funders is on this page.
- How can an organization like THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Pennsylvania. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2017–2025), and the filings of 193 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing