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WORKING TOWARDS AN UNDERSTANDING AND TREATMENTS FOR AMYOTROPHIC LATERAL SCLEROSIS.
Source: IRS Form 990 (Tax Year 2024)
Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2023
Total Revenue
▼$3M
Program Spending
88%
of total expenses go to program services
Total Contributions
$3.1M
Total Expenses
▼$3.4M
Total Assets
$1.7M
Total Liabilities
▼$2.8M
Net Assets
-$1.1M
Officer Compensation
→$732.8K
Other Salaries
$252.4K
Investment Income
$30.9K
Fundraising
▼$618.4K
Tax Year 2023 · Source: IRS Form 990, Schedule I (Grants and Other Assistance)
Total grants awarded: $1.8M
| Recipient | Location | Amount | Type | Purpose |
|---|---|---|---|---|
COLUMBIA UNIVERSITY13-5589093 | NEW YORK, NY | $718K | Cash | MEDICAL RESEARCH |
UNIVERSITY OF CALIFORNIA SAN FRANCISCO94-6036493 | SAN FRANCISCO, CA | $355.3K | Cash | MEDICAL RESEARCH |
PROJENX87-2360623 | NEW YORK, NY | $253.8K | Cash | MEDICAL RESEARCH |
RUTGERS MEDICAL SCHOOL22-6001086 | PISCATAWAY, NJ | $221.4K | Cash | MEDICAL RESEARCH |
UNIVERSITY OF CALIFORNIA SAN DIEGO94-0367788 | LA JOLLA, CA | $152.3K | Cash | MEDICAL RESEARCH |
SALK INSTITUTE95-2016097 | LA JOLLA, CA | $101.5K | Cash | MEDICAL RESEARCH |
WEILL CORNELL MEDICAL COLLEGE13-1623978 | NEW YORK, NY | $30.2K | Cash | MEDICAL RESEARCH |
| Total | $1.8M | |||
NEW YORK, NY
$718K
SAN FRANCISCO, CA
$355.3K
NEW YORK, NY
$253.8K
PISCATAWAY, NJ
$221.4K
LA JOLLA, CA
$152.3K
LA JOLLA, CA
$101.5K
NEW YORK, NY
$30.2K
Source: USAspending.gov
No federal awards found for this organization.
USAspending.gov tracks federal grants, cooperative agreements, and other financial assistance. Not all nonprofits receive federal funding.
Source: Federal Audit Clearinghouse (fac.gov)
No federal single audit records found for this organization.
Single audits are required for entities expending $750,000+ in federal awards annually.
Tax Year 2024 · Source: IRS e-Filed Form 990Schedule J available
Individuals serving as officers, directors, or trustees of the organization.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other |
|---|
Source: IRS Publication 78, Auto-Revocation List & e-Postcard Data
Tax-deductible contributions: Yes
Deductibility code: PC
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2023IRS e-File | $3M | $3.1M | $3.4M | $1.7M | -$1.1M |
| 2022IRS e-File | $3.8M | $3.8M | $4.5M | $1.7M | -$629.3K |
| 2021 | $2.6M | $2.6M | $3.2M | $1.6M | -$573K |
| 2020 | $4.3M |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
| Tax Year | Form Type | Source | Documents |
|---|---|---|---|
| 2024 | 990 | IRS e-File | |
| 2023 | 990 | DataIRS e-File | PDF not yet published by IRSView Filing → |
| 2022 | 990 | DataIRS e-File |
Financial data: IRS e-Filed Form 990 (Tax Year 2023)
Leadership & compensation: IRS e-Filed Form 990, Part VII (Tax Year 2024)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Valerie Estess | Vice President | 50 | $225K | $0 | $31.3K | $256.3K |
| Meredith Estess Hulbert | President | 50 | $225K | $0 | $19.8K | $244.8K |
| Gail Carson | Controller (cfo) | 40 | $103.9K | $0 | $7,919 | $111.8K |
| Margaret Shanahan | Executive Director | 40 | $85K | $0 | $0 | $85K |
| Robert S Kaplan | Chair | 5 | $0 | $0 | $0 | $0 |
| Debbie Wilpon | Chair | 10 | $0 | $0 | $0 | $0 |
Valerie Estess
Vice President
$256.3K
Hrs/Wk
50
Compensation
$225K
Related Orgs
$0
Other
$31.3K
Meredith Estess Hulbert
President
$244.8K
Hrs/Wk
50
Compensation
$225K
Related Orgs
$0
Other
$19.8K
Gail Carson
Controller (cfo)
$111.8K
Hrs/Wk
40
Compensation
$103.9K
Related Orgs
$0
Other
$7,919
Margaret Shanahan
Executive Director
$85K
Hrs/Wk
40
Compensation
$85K
Related Orgs
$0
Other
$0
Robert S Kaplan
Chair
$0
Hrs/Wk
5
Compensation
$0
Related Orgs
$0
Other
$0
Debbie Wilpon
Chair
$0
Hrs/Wk
10
Compensation
$0
Related Orgs
$0
Other
$0
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Arthur Frasier | Director | 0.3 | $0 | $0 | $0 | $0 |
| Bonnie Verbitsky | Director | 0.3 | $0 | $0 | $0 | $0 |
| Bruce Spohler | Director | 0.3 | $0 | $0 | $0 | $0 |
| Chad Cascarilla | Director | 0.3 | $0 | $0 | $0 | $0 |
| Christine Taylor | Director | 0.3 | $0 | $0 | $0 | $0 |
| Daniel Kellison | Director |
Arthur Frasier
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Bonnie Verbitsky
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Bruce Spohler
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
| $4.4M |
| $3.8M |
| $2.6M |
| -$14.6K |
| 2019 | $3.8M | $3.8M | $4.6M | $2M | -$514.4K |
| 2018 | $4.1M | $4M | $4.2M | $3.9M | $253.7K |
| 2017 | $5.5M | $5M | $5.3M | $4.3M | $312.9K |
| 2016 | $2.4M | $2M | $2.5M | $2.5M | $112.6K |
| 2015 | $3M | $2.6M | $3M | $3.2M | $302.7K |
| 2014 | $1.9M | $1.7M | $2M | $2.3M | $332.6K |
| 2013 | $2M | $2M | $2.5M | $2.6M | $421K |
| 2012 | $5.2M | $4.6M | $4.9M | $3.1M | $916.1K |
| 2011 | $4.9M | $3.7M | $5.1M | $2.7M | $619.5K |
| 2021 | 990 | Data | PDF not yet published by IRS |
| 2020 | 990 | Data |
| 2019 | 990 | Data |
| 2018 | 990 | Data |
| 2017 | 990 | Data | PDF not yet published by IRS |
| 2016 | 990 | Data |
| 2015 | 990 | Data |
| 2014 | 990 | Data |
| 2013 | 990 | Data |
| 2012 | 990 | Data |
| 2011 | 990 | Data |
| 2010 | 990 | — |
| 2009 | 990 | — |
| 2008 | 990 | — |
| 2007 | 990 | — |
| 2006 | 990 | — |
| 2005 | 990 | — |
| 2004 | 990 | — |
| 2003 | 990 | — |
| 2002 | 990 | — |
| 2001 | 990 | — |
| 0.3 |
| $0 |
| $0 |
| $0 |
| $0 |
| Darci Carlton | Director | 0.3 | $0 | $0 | $0 | $0 |
| David L Jaffe | Director | 0.3 | $0 | $0 | $0 | $0 |
| Debra Wasserman | Director | 0.3 | $0 | $0 | $0 | $0 |
| F Jonathan Dracos | Director | 0.3 | $0 | $0 | $0 | $0 |
| Jack Merrill | Director | 0.3 | $0 | $0 | $0 | $0 |
| Lawrence Tarica | Director | 0.3 | $0 | $0 | $0 | $0 |
| Lori Hirshliefer Sills | Director | 0.3 | $0 | $0 | $0 | $0 |
| Marcie Fleck | Director | 0.3 | $0 | $0 | $0 | $0 |
| Martha Mccully | Director | 0.3 | $0 | $0 | $0 | $0 |
| Michael Berman | Director | 0.3 | $0 | $0 | $0 | $0 |
| Nancy Jarecki | Director | 0.3 | $0 | $0 | $0 | $0 |
| Peter J Hulbert | Director | 0.3 | $0 | $0 | $0 | $0 |
| Rob Burnett | Director | 0.3 | $0 | $0 | $0 | $0 |
| Rob Morrow | Director | 0.3 | $0 | $0 | $0 | $0 |
| Simon Halls | Director | 0.3 | $0 | $0 | $0 | $0 |
| Stacey Griffith | Director | 0.3 | $0 | $0 | $0 | $0 |
| Staci Kirchhoff | Director | 0.3 | $0 | $0 | $0 | $0 |
| Sue Leibman | Director | 0.3 | $0 | $0 | $0 | $0 |
| Tara Spiegel | Director | 0.3 | $0 | $0 | $0 | $0 |
Chad Cascarilla
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Christine Taylor
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Daniel Kellison
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Darci Carlton
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
David L Jaffe
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Debra Wasserman
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
F Jonathan Dracos
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Jack Merrill
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Lawrence Tarica
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Lori Hirshliefer Sills
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Marcie Fleck
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Martha Mccully
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Michael Berman
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Nancy Jarecki
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Peter J Hulbert
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Rob Burnett
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Rob Morrow
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Simon Halls
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Stacey Griffith
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Staci Kirchhoff
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Sue Leibman
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0
Tara Spiegel
Director
$0
Hrs/Wk
0.3
Compensation
$0
Related Orgs
$0
Other
$0