The Association for Frontotemporal Degeneration
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.
Key facts about The Association for Frontotemporal Degeneration
In short: The Association for Frontotemporal Degeneration gave $1.5M across 6 grants in 2025 (avg $258K), top state New York. Source: 2025 IRS Form 990.
- EIN
- 41-2073220
- Latest 990 filing
- Form 990, 2025
- Annual giving (2025)
- $1,547,368
- Grants made (2025)
- 6
- Average grant
- $257,895
- Median grant
- $175,000
- Total assets
- $60,143,025
- Primary geography
- New York (45% of itemized 2025 grant dollars)
Data from IRS Form 990, 2025; updated September 2026.
Financial Overview
From 2025 IRS Form 990 · View filing
Total Assets
$60.1M
+11.4% YoY
Annual Giving
$1.5M
-38.7% YoY
Grant Count
6
-40.0% YoY
Avg Grant Size
$258K
+2.1% YoY
How The Association for Frontotemporal Degeneration gives
- Giving fell 25% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
About The Association for Frontotemporal Degeneration
Based on IRS filings
The Association for Frontotemporal Degeneration is a public charity focused on Medical Research, based in King of Prussia, PA. IRS filing data is available from 2021 through 2025. As of 2025, the organization holds $60.1M in total assets. In 2025, it awarded 6 grants totaling $1.5M. Net investment income was $1.9M.
Focus Areas
Open Grants
6 open opportunities from The Association for Frontotemporal Degeneration
Accelerating Drug Discovery Grant
The Association for Frontotemporal Degeneration
Amount
Varies
Deadline
Rolling / Open
AFTD Holloway Fellowships
The Association for Frontotemporal Degeneration
Amount
Varies
Deadline
Rolling / Open
Clinical Research Training Scholarship in FTD
The Association for Frontotemporal Degeneration
Amount
Varies
Deadline
Rolling / Open
Ready to take the next step with The Association for Frontotemporal Degeneration?
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 6 itemized grants.
States
Cities
Giving Over Time
Total grant dollars and number of grants per year
From 2021 to 2025, annual grant giving ranged from $1.5M (2023) to $3.4M (2021). In 2025 it made 6 grants totaling $1.5M.
Grant Insights
How this funder distributes its grants
Top Recipients
Top 6 recipients in 2025
The largest 2025 recipient was Alzheimer's Drug Discovery Foundation ($700K). Together the top 6 received $1.5M.
Grant Size Distribution
43 grants across all recorded years
The most common grant size was in the $100–250K range: 20 grants of 43 (47%).
Giving History
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Alzheimer's Drug Discovery Foundation New York, NY | Addf/aftd drug discovery program and treat treatftd therapeutic initiative | $700,000 |
| The FTD Disorders Registry King of Prussia, PA | FTD Patient Registry | $287,374 |
| Washington University in St Louis St. Louis, MO | Pathways for Hope Pilot Grant | $230,000 |
| Stanford University Stanford, CA | Holloway Postdoctoral Fellowship | $120,000 |
| University of Texas at Austin Austin, TX | Well-Being in FTD Pilot Grant | $109,994 |
| American Brain Foundation Minneapolis, MN | Clinical Research Scholarships | $100,000 |
Financial History
Multi-year comparison from IRS filings
| Metric | 2025 | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $60,143,025 | $53,971,673 | $47,470,345 |
| Revenue | $14,420,554 | $13,139,120 | $8,537,416 |
| Expenses | $11,559,795 | $11,526,939 | $9,663,807 |
| Net Investment Income | $1,935,108 | $899,785 | $-35,633 |
Data update history
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2021 (received by the IRS November 10, 2021)
- Updated Form 990 for fiscal year 2022 (received by the IRS December 19, 2022)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 8, 2023)
- Updated Form 990 for fiscal year 2024 (received by the IRS November 13, 2024)
- Updated Form 990 for fiscal year 2025 (received by the IRS October 16, 2025)
- IRS filings on file for fiscal years 2021–2025
Leadership & Key People
Officers and directors from IRS filings
The Association for Frontotemporal Degeneration is led by Susan L-J Dickinson, Chief Executive Officer on every filing since 2021; 7 of 29 officers listed in 2025 are compensated.
Officers on the 2025 filing
Susan L-J Dickinson
Chief Executive Officer
On filings since 2021
36 hrs/week
$211K (2021) → $320K (2025)
Rita Choula
Chair
Director → Vice Chair, 2023
Vice Chair → Chair, 2025
On filings since 2021
4 hrs/week
No compensation reported
Sharon Denny
Senior Director of Programs
On filings since 2021
40 hrs/week
$135K (2021) → $174K (2025)
Penny Dacks
Senior Director of Scientific Initiatives
On filings since 2022
30 hrs/week
$197K (2022) → $226K (2025)
Shana Dodge
Director of Research Engagement
On filings since 2023
40 hrs/week
$146K (2023) → $153K (2025)
Peter Witzleb
Director of It
On filings since 2024
40 hrs/week
$162K (2024) → $169K (2025)
Phillip John Weichel
Senior Director of Advancement
New on the 2025 filing
40 hrs/week
$158K (2025)
David Pfeifer
Director
Chair → Director, 2023
On filings since 2021
3 hrs/week
No compensation reported
Helen-Ann Comstock
Director
On filings since 2021
3 hrs/week
No compensation reported
Jary Larsen
Director
On filings since 2021
4 hrs/week
No compensation reported
Joseph Marquez
Director
On filings since 2021
2 hrs/week
No compensation reported
Kristin Holloway
Director
On filings since 2021
2 hrs/week
No compensation reported
Kristin Schneeman
Director
On filings since 2021
3 hrs/week
No compensation reported
Halima Amjad
Director
On filings since 2022
3 hrs/week
No compensation reported
Kathy Mele
Director
On filings since 2022
3 hrs/week
No compensation reported
Kim Torres
Director
Vice Chair → Chair, 2023
Chair → Director, 2025
On filings since 2022
2 hrs/week
No compensation reported
Abrar Tanveer
Director
On filings since 2023
2 hrs/week
No compensation reported
Don Newhouse
Director
On filings since 2023
2 hrs/week
No compensation reported
Marg Sutherland
Director
On filings since 2023
2 hrs/week
No compensation reported
Shoshana Krilow
Director
On filings since 2023
3 hrs/week
No compensation reported
Jill Goldman
Director
On filings since 2024
2 hrs/week
No compensation reported
Girish Patangay
Director
New on the 2025 filing
3 hrs/week
No compensation reported
Joe Esposito
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Kyle Birmingham
Director
New on the 2025 filing
3 hrs/week
No compensation reported
Lenn Marquez
Director
New on the 2025 filing
3 hrs/week
No compensation reported
Mitch Appleson
Chief Operating Officer
On filings since 2022
38 hrs/week
$169K (2023) → $255K (2025)
Gail Anderson
Vice Chair
Director → Secretary, 2023
Secretary → Vice Chair, 2025
On filings since 2022
4 hrs/week
No compensation reported
Julie Kelly
Treasurer
Director → Treasurer, 2024
On filings since 2023
4 hrs/week
No compensation reported
Valerie Snow
Secretary
Director → Secretary, 2025
On filings since 2024
4 hrs/week
No compensation reported
Former officers (17)
- Former: Benjamin Freeman (2021–2024) — Director of Development & Committee
- Former: Christine Rogers Stevens (2021–2024) — Director of Finance
- Former: Sandra Grow (2021–2024) — Director
- Former: Kyle Brimingham (2024) — Director
- Former: Brian Rose (2021–2023) — Director
- Former: Christian Barrow (2021–2023) — Treasurer
- Former: Kacy Kunesh (2021–2023) — Director
- Former: Michael Stowell (2021–2023) — Director
- Former: Danny Hedaya (2023) — Director
- Former: Daniel Hedaya (2021–2022) — Director
- Former: Donald E. Newhouse (2021–2022) — Director
- Former: Debra Niehoff (2022) — Director of Research & Grants
- Former: Esther Kane (2022) — Director of Support & Education
- Former: Beth Walter (2021) — Director
- Former: Kimberly Pang Torres (2021) — Vice Chair
- Former: Matthew Hatfield (2021) — Director
- Former: Rick Childs (2021) — Director
Data from IRS Form 990 filings, 2021–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $320K, to Susan L-J Dickinson (Chief Executive Officer). 7 officers or directors reported compensation on that filing.
Frequently asked questions about The Association for Frontotemporal Degeneration
How much does The Association for Frontotemporal Degeneration give each year?
The Association for Frontotemporal Degeneration gave $1.5M across 6 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $2.5M across 10 grants.
What is The Association for Frontotemporal Degeneration's typical grant size?
The Association for Frontotemporal Degeneration's median grant in 2025 was $175,000, and its average grant was $257,895, across 6 grants on its 2025 IRS Form 990.
Where does The Association for Frontotemporal Degeneration give grants?
The Association for Frontotemporal Degeneration's top state is New York, with 45% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were Pennsylvania (19%) and Missouri (15%).
Does The Association for Frontotemporal Degeneration give general operating support?
Not in 2025: none of the 6 grants with a stated purpose on The Association for Frontotemporal Degeneration's 2025 IRS Form 990 were described as general or operating support.
Who are The Association for Frontotemporal Degeneration's largest grantees?
The Association for Frontotemporal Degeneration's largest 2025 grantees include Alzheimer's Drug Discovery Foundation ($700,000), The FTD Disorders Registry ($287,374) and Washington University in St Louis ($230,000), according to its 2025 IRS Form 990. Together they received 79% of its itemized 2025 grant dollars.
How large is The Association for Frontotemporal Degeneration?
The Association for Frontotemporal Degeneration reported $60.1M in total assets on its 2025 IRS Form 990. Its revenue that year was $14.4M.
What is The Association for Frontotemporal Degeneration?
The Association for Frontotemporal Degeneration is a public charity focused on Medical Research, based in King of Prussia, PA. It holds $60.1M in total assets as of 2025.
What is The Association for Frontotemporal Degeneration's EIN?
The Association for Frontotemporal Degeneration's EIN (Employer Identification Number) is 41-2073220. IRS Form 990 filing data is available on this page for 2021–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Here's the math on researching The Association for Frontotemporal Degeneration by hand.
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