Project ALS Inc
To recruit the world's best research scientists and clinicians to work together toward an understanding of and the first effective treatments for als (amyotrophic lateral sclerosis) also known as lou gehrig's disease.
Project ALS Inc at a glance
In short: Project ALS Inc gave $1.1M across 2 grants in 2025 (avg $572K), mostly in New York. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $1,143,696
- -37.6% vs 2024
- Grants made (2025)
- 2
- -71.4% vs 2024
- Average grant
- $571,848
- +118.4% vs 2024
- Median grant
- $571,848
- Total assets
- $1,467,282
- -16.1% vs 2024
- Primary geography
- New York (80% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who Project ALS Inc funds
How this funder distributes its grants
Top Recipients
Top 2 recipients in 2025
The largest 2025 recipient was Columbia University ($912K). Together the top 2 received $1.1M.
Grant Size Distribution
22 grants across all recorded years
The most common grant size was in the $100–250K range: 6 grants of 22 (27%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 2 itemized grants.
Cities
How Project ALS Inc gives
- Giving fell 44% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $1.1M (2025) to $2.9M (2023). In 2025 it made 2 grants totaling $1.1M.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Columbia University New York, NY | Medical Research | $912,468 |
| University of California San Francisco San Francisco, CA | Medical Research | $231,228 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $1,467,282 | $3,298,805 | $2,919,119 | $1,143,696 | 2 | $37,810 |
| 2024 | $1,748,266 | $2,979,518 | $3,412,851 | $1,832,512 | 7 | $30,867 |
| 2023 | $1,661,605 | $3,776,913 | $4,483,713 | $2,940,210 | 5 | $-313 |
| 2022 | $1,177,668 | $3,596,233 | $3,498,948 | $2,059,422 | 4 | $459 |
| 2021 | $1,558,325 | $2,611,375 | $3,172,033 | $2,460,234 | 4 | $1,908 |
| 2020 | $2,583,051 | $4,308,751 | $3,808,849 | $1,616,764 | 3 | $1,645 |
About Project ALS Inc
Based on IRS filings
Project ALS Inc is a public charity focused on Diseases, Disorders & Medical Disciplines, based in New York, NY. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $1.5M in total assets. In 2025, it awarded 2 grants totaling $1.1M. Net investment income was $38K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Project ALS Inc is led by Meredith Estess Hulbert, President on every filing since 2020; 4 of 31 officers listed in 2025 are compensated.
Officers on the 2025 filing
Meredith Estess Hulbert
President
On filings since 2020
50 hrs/week
$174K (2020) → $234K (2025)
Margaret Shanahan
Executive Director
On filings since 2024
40 hrs/week
$85K (2024) → $111K (2025)
Debbie Wilpon
Chair
Co-Chair → Chair, 2022
On filings since 2020
10 hrs/week
No compensation reported
Robert S. Kaplan
Chair
Co-Chair → Chair, 2022
On filings since 2020
5 hrs/week
No compensation reported
Staci Kirchhoff
Chair
Director → Chair, 2025
On filings since 2020
0.3 hrs/week
No compensation reported
Arthur Frasier
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Bonnie Verbitsky
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Chad Cascarilla
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Christine Taylor
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Daniel Kellison
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Darci Carlton
Director
On filings since 2020
0.3 hrs/week
No compensation reported
David L. Jaffe
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Debra Wasserman
Director
On filings since 2020
0.3 hrs/week
No compensation reported
F. Jonathan Dracos
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Jack Merrill
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Lawrence Tarica
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Lori Hirshliefer Sills
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Marcie Fleck
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Martha McCully
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Michael Berman
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Nancy Jarecki
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Peter J. Hulbert
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Rob Burnett
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Rob Morrow
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Simon Halls
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Stacey Griffith
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Sue Leibman
Director
On filings since 2020
0.3 hrs/week
No compensation reported
Bruce Spohler
Director
Director From → Director, 2023
On filings since 2022
0.3 hrs/week
No compensation reported
Tara Spiegel
Director
On filings since 2024
0.3 hrs/week
No compensation reported
Valerie Estess
Vice President
On filings since 2020
50 hrs/week
$174K (2020) → $234K (2025)
Gail Carson
Controller
On filings since 2024
40 hrs/week
$104K (2024) → $108K (2025)
Former officers (5)
- Former: Regina Kulik Scully (2020–2023) — Director
- Former: Erin Flemming (2020–2022) — Director of Research - Corporate
- Former: Gena Fajgenbaum Combs (2020–2022) — Director
- Former: Adam Brenneman (2020) — Director
- Former: Aimee David (2020) — Director
Data from IRS Form 990 filings, 2020–2025. "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 $234K, to Meredith Estess Hulbert (President). 4 officers or directors reported compensation on that filing.
Frequently asked questions about Project ALS Inc
How much does Project ALS Inc give each year?
Project ALS Inc gave $1.1M across 2 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $1.8M across 7 grants.
How large is Project ALS Inc?
Project ALS Inc reported $1.5M in total assets on its 2025 IRS Form 990. Its revenue that year was $3.3M.
What is Project ALS Inc?
Project ALS Inc is a public charity focused on Diseases, Disorders & Medical Disciplines, based in New York, NY. It holds $1.5M in total assets as of 2025.
Where does Project ALS Inc operate?
Project ALS Inc has awarded grants in California, Maryland, New Jersey, New York.
What is Project ALS Inc's EIN?
Project ALS Inc's EIN (Employer Identification Number) is 13-4019464. IRS Form 990 filing data is available on this page for 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2021 (received by the IRS June 14, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS June 13, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS June 17, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS June 16, 2025)
- Updated Form 990 for fiscal year 2020 (received by the IRS November 10, 2022)
- Added Form 990 for fiscal year 2025 (received by the IRS June 15, 2026)
- IRS filings on file for fiscal years 2020–2024
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