The Association for Frontotemporal Degeneration
The Association for Frontotemporal Degeneration reported $14.4 million in revenue and $11.6 million in expenses for the fiscal year ending June 30, 2025. Of every $100 it spent, $81.85 went to program services, $4.02 to management and general costs and $14.13 to fundraising. Its largest source of revenue was contributions and grants: 85.6% of the total. The highest compensation it reported for one person was $350,014 (CHIEF EXECUTIVE OFFICER). 16 people received more than $100,000 in reportable compensation. Revenue rose 53% between FY2020 and FY2025. Source: Form 990, FY2025.
Where $100 of spending went
The fiscal year ending June 30, 2025 · Form 990, Part IX, line 25 · total expenses $12MFor context, the median across 169 covered medical research charities: $87.02 programs, $12.87 management, $0.11 fundraising (medians computed separately, so they may not sum to $100).
Where $100 of revenue came from
The fiscal year ending June 30, 2025 · Form 990, Part VIII · total revenue $14M- Contributions & grants (non-government)$84.66 $12M
- Program service revenue$2.07 $303K
- Investment income$13.27 $1.9M
Other revenue was negative: −$163K. The bar shows the positive sources only.
The 990 scorecard · same measures for every charity, no grades
| Measure | FY2025 | Median |
|---|---|---|
| Program services Part IX 25(B) ÷ 25(A) | 81.8% | 83.9% |
| Management & general Part IX 25(C) ÷ 25(A) | 4.0% | 12.4% |
| Fundraising Part IX 25(D) ÷ 25(A) | 14.1% | 0.1% |
| Fundraising cost per $1 of contributions Part IX 25(D) ÷ Part VIII 1h | $0.13 | $0.01 |
| Contributions & grants share of revenue Part VIII 1h ÷ 12 | 85.6% | 72.7% |
| Government grants share of revenue Part VIII 1e ÷ 12 | 0.0% | 0.0% |
| Program service revenue share Part VIII 2g ÷ 12 | 2.1% | 5.8% |
| Highest reported compensation Part VII-A, columns D–F | $350,014 | $628,890 |
| Highest compensation as share of expenses Part VII-A ÷ Part IX 25(A) | 3.03% | 1.94% |
| People paid over $100,000 Part VII, line 2 | 16 | 18 |
| Net assets, in months of expenses Part X 33(B) ÷ monthly expenses | 59.1 | 13.3 |
| Independent voting board members Part VI 1a–1b | 21 of 21 | 93.8% |
A median is context, not a target: hospitals, universities, food banks and grantmakers spend in very different ways. What these measures can and can't tell you.
What the money paid for, in its own words
FY2025 · Form 990, Part III · the three largest programs by expenseResearch - 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…
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…
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…
Highest reported compensation
FY2025 · Form 990, Part VII, Section A · roles as filed; names are in the filing, not here| Role | From this org | From related orgs | Other | Total |
|---|---|---|---|---|
| CHIEF EXECUTIVE OFFICER Officer, 36.00 hrs/week | $320,026 | $0 | $29,988 | $350,014 |
| CHIEF OPERATING OFFICER Officer, 38.00 hrs/week | $255,015 | $0 | $28,570 | $283,585 |
| SR DIRECTOR OF SCIENTIFIC INITIATIVES Highest compensated employee, 30.00 hrs/week | $226,491 | $0 | $17,572 | $244,063 |
| SR DIRECTOR OF PROGRAMS Highest compensated employee, 40.00 hrs/week | $174,174 | $0 | $26,116 | $200,290 |
| SR DIRECTOR OF ADVANCEMENT Highest compensated employee, 40.00 hrs/week | $157,933 | $0 | $42,270 | $200,203 |
| DIRECTOR OF IT Highest compensated employee, 40.00 hrs/week | $168,866 | $0 | $6,033 | $174,899 |
| DIRECTOR OF RESEARCH ENGAGEMENT Highest compensated employee, 40.00 hrs/week | $152,910 | $0 | $15,035 | $167,945 |
16 people received more than $100,000 in reportable compensation from The Association for Frontotemporal Degeneration (Part VII, line 2). Compensation of current officers, directors and key employees totaled $651K (Part IX, line 5).
6 years of filings
Form 990, Parts I, VII, IX and X · each row is that year's own filing, linkedGovernance answers, as filed
FY2025 · the organization's own yes/no answers; explanations, if any, are in Schedule O of the filing · what each means- Voting board members, and how many are independent Part VI, lines 1a–1b21 · 21 independent
- Audited financial statements Part XII 2bYes
- Conflict-of-interest policy Part VI 12aYes
- Whistleblower policy Part VI 13Yes
- Document retention policy Part VI 14Yes
- Independent process for top executive pay Part VI 15aYes
- Board given the 990 before filing Part VI 11aYes
- Family or business ties among insiders Part VI 2Yes
- Aware of a significant diversion of assets Part VI 5No
- Excess benefit transaction with an insider Part IV 25aNo
- Loans to or from insiders outstanding Part IV 26No
- Lobbying, or a 501(h) election in effect Part IV 4Yes
- Over $15,000 of professional fundraising services Part IV 18Yes
- Over $10,000 of activity outside the U.S. Part IV 14bYes
- Employees Part I, line 564
- Volunteers Part I, line 6605
Largest outside contractors
FY2025 · Form 990, Part VII, Section B · businesses only| PRECON Av for annual education conference | $211,632 |
| MERIPLEX SOLUTIONS LLC It consultant | $111,685 |
| COREZ Venue | $101,376 |
Individuals listed as contractors are left out. 3 contractors were paid more than $100,000 in all.
Private foundation grants it received
41 private foundations reported grants to The Association for Frontotemporal Degeneration totaling $1.5M on their tax year 2023 Form 990-PF returns. See which foundations, on WHOFUNDS.
Source: WHOFUNDS open grant graph, matched from Form 990-PF Part XV.
Correct a figure or respond
Every number above is copied from The Association for Frontotemporal Degeneration's own Form 990. If one doesn't match the filing, that's our error and we'll fix it. If you work for The Association for Frontotemporal Degeneration, you can publish a response that is linked from this page.
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Of every $100 The Association for Frontotemporal Degeneration spent in FY2025, $81.85 went to programs. The full breakdown, from its IRS Form 990:
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Similar-sized charities in this cause
- Metis FoundationSan Antonio, TX · revenue $14M · programs 83.9% · 2024
- The Zachary & Elizabeth M Fisher Center for Alzheimer's Research FoundationNew York, NY · revenue $15M · programs 91.8% · 2024
- Lungevity FoundationChicago, IL · revenue $14M · programs 85.1% · FY2025
- Baruch S Blumberg InstituteDoylestown, PA · revenue $15M · programs 68.4% · FY2025
- Steadman Philippon Research InstituteVail, CO · revenue $14M · programs 72.5% · 2024
All medical research charities · Largest charities in Pennsylvania
Questions people ask
How much of The Association for Frontotemporal Degeneration's spending goes to programs?
In the fiscal year ending June 30, 2025, The Association for Frontotemporal Degeneration reported that 81.8% of its $11.6 million in expenses went to program services, 4.0% to management and general and 14.1% to fundraising (Form 990, Part IX).
How much does The Association for Frontotemporal Degeneration pay its top executive?
The largest total compensation The Association for Frontotemporal Degeneration reported for one person in the fiscal year ending June 30, 2025 was $350,014, for the role of CHIEF EXECUTIVE OFFICER (Form 990, Part VII, including compensation from related organizations and other compensation).
Where does The Association for Frontotemporal Degeneration get its money?
Of $14.4 million in revenue in the fiscal year ending June 30, 2025, 85.6% came from contributions and grants and 2.1% from program service revenue (Form 990, Part VIII).
Is The Association for Frontotemporal Degeneration a registered charity?
The IRS lists EIN 41-2073220 as a 501(c)(3) organization (publicly supported organization (170(b)(1)(a)(vi))), and its records show contributions as tax-deductible. Form 990 filings on record here cover tax years 2019, 2020, 2021, 2022, 2023, 2024. A filing shows what the organization reported; it doesn't by itself show whether a program works.
Sources
- FY2025: Form 990 for the fiscal year ending June 30, 2025, object 202542899349301639 · read the filing · XML
- FY2024: Form 990 for the fiscal year ending June 30, 2024, object 202403189349300830 · read the filing
- FY2023: Form 990 for the fiscal year ending June 30, 2023, object 202313129349302026 · read the filing
- FY2022: Form 990 for the fiscal year ending June 30, 2022, object 202243539349300339 · read the filing
- FY2021: Form 990 for the fiscal year ending June 30, 2021, object 202113149349300711 · read the filing
- FY2020: Form 990 for the fiscal year ending June 30, 2020, object 202042749349300004 · read the filing
All filings for EIN 41-2073220: ProPublica Nonprofit Explorer · IRS Tax Exempt Organization Search. Figures are as the organization reported them; we have not audited them.