Amyotrophic Lateral Sclerosis Assn
Amyotrophic Lateral Sclerosis Assn is a public charity based in Arlington, Virginia. It supports work related to amyotrophic lateral sclerosis (ALS), including research, advocacy, care services, and programs for people living with ALS, families, caregivers, and professionals.
Key facts about Amyotrophic Lateral Sclerosis Assn
In short: Amyotrophic Lateral Sclerosis Assn gave $11.9M across 185 grants in 2025 (avg $64K), top state Florida. 18% of 2025 grantees were new. Source: 2025 IRS Form 990.
- EIN
- 13-3271855
- Latest 990 filing
- Form 990, 2025
- Annual giving (2025)
- $11,870,507
- Grants made (2025)
- 185
- Average grant
- $64,165
- Median grant
- $25,000
- New grantees (estimate)
- 18% first-time grantees (26 of 144, 2025)
- Total assets
- $100,352,304
- Primary geography
- Florida (22% of itemized 2025 grant dollars)
- How to apply
- For the listed research opportunities, submit an LOI; a full proposal is by invitation only. Full details ↓
- Deadline
- October 8, 2026, at 5:00 p.m.
Data from IRS Form 990, 2025; updated September 2026. New grantees are estimated by matching recipient names across years (methodology). Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Financial Overview
From 2025 IRS Form 990 · Covers 17 months (fiscal year-end changed) · View filing
Total Assets
$100.4M
-21.5% YoY
Annual Giving
$11.9M
Grant Count
185
Avg Grant Size
$64K
Is Amyotrophic Lateral Sclerosis Assn open to new grantees?
18%
first-time grantees, 2025
In 2025, 26 of 144 grantees (18%) were first-time recipients. First grants averaged $90K; repeat grants $81K. How we count
Medians: $55K first-time, $25K repeat.
- 71% of 2025 grantees were also funded in 2024. Method
Estimate from itemized grant lists in IRS Form 990 filings (2020–2025). Recipient names are matched across years, so a renamed or misspelled grantee can look new; grants to individuals are left out. Methodology.
Mission & Focus Areas
The organization states its mission as “leading the fight to cure and treat ALS through research, advocacy and care services.” Its website describes a research portfolio spanning basic science through early-phase clinical trials, as well as work in prevention, assistive technology, quality of care, and research infrastructure. Its filing also describes patient and community services, clinical and professional education, care-center certification, information and referrals, and advocacy for research funding and support for people living with ALS.
Its 2025 grants included support for quality of care, assistive technology, clinic development and capacity, and strategic initiatives. Recipients included hospitals, universities, research organizations, and companies. For example, the Pardee Memorial Hospital Foundation said its mission is to educate and inspire community support for Henderson County Hospital Corporation, while Pitt County Memorial Hospital said its mission is to improve health and well-being in eastern North Carolina. The Foundation for the National Institutes of Health described its mission as creating alliances and public-private partnerships to advance biomedical discoveries and improve people’s lives.
Grantmaking
Among the largest awards were $250,000 to Mayo Clinic Arizona for a quality of care program; $198,341 to the Regents of the University of California Davis for assistive technology; and $179,492 to Control Bionics Inc for assistive technology. Clinic awards included $172,863 to Pardee Memorial Hospital Foundation for a Hoffman ALS Clinic Development Award and $144,000 to Pitt County Memorial Hospital for a Hoffman ALS Clinic Capacity Award.
For research opportunities, the Association says applicants submit a letter of intent (LOI), followed by a full proposal by invitation, with applications reviewed through a structured process. Its listed Next Generation Research Grant in ALS and Richard Olney Next Generation Clinician Scientist Grant in ALS have deadlines of October 8, 2026, at 5:00 p.m. Central Time. The website also describes clinic funding opportunities, which have their own application processes. The 2026 application period for the Needs Focused Grant Program for Clinics ran from May 1 through June 12, 2026, and has passed. The website’s Seed Grants information says new requests for applications are paused.
Review Cycle
October 8, 2026, at 5:00 p.m. Central Time for the listed Next Generation Research Grant in ALS and Richard Olney Next Generation Clinician Scientist Grant in ALS.
Invitation Only
For the listed research opportunities, submit an LOI; a full proposal is by invitation only. Clinic opportunities use separate application processes.
Open Grants
5 open opportunities from Amyotrophic Lateral Sclerosis Assn
ALS Association Seed Grants
Amyotrophic Lateral Sclerosis Assn
Amount
Varies
Deadline
Deadline not published
Hoffman ALS Clinical Trial Awards Program
Amyotrophic Lateral Sclerosis Assn
Amount
Varies
Deadline
Deadline not published
Milton Safenowitz Postdoctoral Fellowship Program
Amyotrophic Lateral Sclerosis Assn
Amount
Varies
Deadline
Deadline not published
Ready to take the next step with Amyotrophic Lateral Sclerosis Assn?
Geographic Focus
Where this funder awards grants
The Association’s 2025 grant dollars went to recipients across multiple states. The largest shares by recipient state were California (15%), Florida (11%), North Carolina (9%), Illinois (8%), and Ohio (8%).
Grant Distribution by State
Share of 2025 grant dollars across all 185 itemized grants.
States
Cities
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $10.4M (2021) to $16.9M (2020). In 2025 it made 185 grants totaling $11.9M.
*2025: Covers 17 months (fiscal year-end changed).
Grant Insights
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2025
The largest 2025 recipient was University of Miami ($795K across 2 grants). Together the top 10 received $4.2M.
Grant Size Distribution
788 grants across all recorded years
The most common grant size was under $50K: 437 grants of 788 (55%).
Giving History
Grant recipients and amounts by year
*2025: Covers 17 months (fiscal year-end changed).
| Recipient | Purpose | Amount |
|---|---|---|
| University of Miami Miami, FL | Bitner Plante Quarterly Grant FY25 | $652,154 |
| University Medical Service Association Inc Orlando, FL | Bitner Plante Quarterly Grant FY25 | $551,417 |
| Mayo Clinic Florida Rochester, MN | Bitner Plante Quarterly Grant FY25 | $426,327 |
| American Brain Foundation Minneapolis, MN | Clinical scientist development award/clinical research training fellowship/shelia essey award | $323,000 |
| Asha Therapeutics Tampa, FL | Drug Development Contract | $250,000 |
| Modulo Bio Inc San Diego, CA | Drug Development Contract | $250,000 |
| Mayo Clinic Arizona Scottsdale, AZ | Quality of Care Program | $250,000 |
| Projenx Inc New York, NY | Clinical Trial Award | $247,700 |
| Nova Southeastern University Fort Lauderdale, FL | Bitner Plante Quarterly Grant FY25 | $239,332 |
| Everylife Foundation for Rare Diseases Washington, DC | Scholarships | $210,711 |
Financial History
Multi-year comparison from IRS filings
Amounts below are reported by filing year.
| Filing year | Assets | Revenue | Expenses | Grants |
|---|---|---|---|---|
| 2025 | $100,352,304 | $20,939,101 | $26,026,684 | $3,509,570 |
| 2024 | $127,891,549 | $126,450,238 | $98,839,577 | $15,118,914 |
| 2023 | $94,445,022 | $55,567,608 | $84,199,819 | $14,912,960 |
The 2024 filing narrative notes that the organization changed its tax year and submitted a short-period Form 990.
*2025: Covers 17 months (fiscal year-end changed).
| Metric | 2025* | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $100,352,304 | $127,891,549 | $94,445,022 |
| Revenue | $89,522,152 | $126,450,238 | $55,567,608 |
| Expenses | $108,266,321 | $98,839,577 | $84,199,819 |
| Net Investment Income | $2,254,961 | $1,597,516 | $1,771,537 |
*2025: Covers 17 months (fiscal year-end changed).
Data update history
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS June 19, 2020)
- Updated Form 990 for fiscal year 2021 (received by the IRS June 15, 2021)
- Updated Form 990 for fiscal year 2022 (received by the IRS August 1, 2022)
- Updated Form 990 for fiscal year 2023 (received by the IRS December 13, 2023)
- Updated Form 990 for fiscal year 2024 (received by the IRS December 13, 2024)
- Updated Form 990 for fiscal year 2025 (received by the IRS May 14, 2026)
- IRS filings on file for fiscal years 2020–2025
Leadership & Key People
Leadership team and compensation from IRS filings
The 2025 filing lists Larry Falivena as chair; Nancy Leamond as vice chair; Steve Hanon as secretary; Mark Stancil as treasurer; and Scott Kauffman as immediate past chair. It lists Peter McKown, Rebecca Moss, Danielle Boisvert, Annette Bowman, and Eve Dryer as trustees.
Amyotrophic Lateral Sclerosis Assn is led by Calaneet Balas, President & CEO on every filing since 2020; none of the 21 officers listed in 2025 report compensation.
Officers on the 2025 filing
Calaneet Balas
President & CEO
On filings since 2020
37.5 hrs/week
$359K (2020) → $0 (2025)
Larry Falivena
Chair
Trustee → Chair, 2025
On filings since 2021
5 hrs/week
No compensation reported
Doug Butcher
Trustee
On filings since 2020
2 hrs/week
No compensation reported
William Soffell
Trustee
On filings since 2020
2 hrs/week
No compensation reported
Sandra Piersol
Trustee
Secretary → Trustee, 2025
On filings since 2022
2 hrs/week
No compensation reported
Michael Benatar
Trustee
On filings since 2023
2 hrs/week
No compensation reported
Peter McKown
Trustee
On filings since 2023
2 hrs/week
No compensation reported
Rebecca Moss
Trustee
On filings since 2023
2 hrs/week
No compensation reported
Bernie Zipprich
Trustee
On filings since 2024
2 hrs/week
No compensation reported
Chris Tonniges
Trustee
On filings since 2024
2 hrs/week
No compensation reported
Jesse Ybarra
Trustee
On filings since 2024
2 hrs/week
No compensation reported
Annette Bowman
Trustee
New on the 2025 filing
2 hrs/week
No compensation reported
Danielle Boisvert
Trustee
New on the 2025 filing
2 hrs/week
No compensation reported
Eve Dryer
Trustee
New on the 2025 filing
2 hrs/week
No compensation reported
Kelly Hall
Trustee
New on the 2025 filing
2 hrs/week
No compensation reported
Seda Goff
Trustee
New on the 2025 filing
2 hrs/week
No compensation reported
Greg Mitchell
Chief Financial Officer
Executive Vice President, Finance & Administration → Chief Financial Officer, 2021
On filings since 2020
37.5 hrs/week
$258K (2020) → $0 (2025)
Mark Stancil
Treasurer
Treasurer → Trustee, 2021
Trustee → Treasurer, 2024
On filings since 2020
4 hrs/week
No compensation reported
Scott Kauffman
Immediate Past Chair
Chair-Elect → Chair, 2023
Chair → Immediate Past Chair, 2025
On filings since 2020
4 hrs/week
No compensation reported
Nancy Leamond
Vice Chair
Trustee → Vice Chair, 2025
On filings since 2022
5 hrs/week
No compensation reported
Steve Hanon
Secretary
New on the 2025 filing
4 hrs/week
No compensation reported
Former officers (47)
- Former: Brian Frederick (2020–2024) — Senior Vice President Strategic Communications
- Former: Charlie Robinson D. Sc Pe (2020–2024) — Trustee
- Former: Christi L. Kolarcik PhD (2020–2024) — Trustee
- Former: Connie Houston (2020–2024) — Trustee
- Former: Eugene Brandon PhD (2020–2024) — Trustee
- Former: Fred M. Degrandis (2020–2024) — Vice Chair
- Former: J. Thomas May (2020–2024) — Trustee
- Former: John P. Krave JD (2020–2024) — Trustee
- Former: Judy Pratt DMD (2020–2024) — Trustee
- Former: Lance Slaughter (2020–2024) — Senior Vice President Strategic Alliances An
- Former: Lou Libby MD (2020–2024) — Trustee
- Former: Mark Calmes (2020–2024) — Trustee
- Former: Millie Arnold (2020–2024) — Trustee
- Former: Monica Santa Cruz (2020–2024) — Chief People Officer
- Former: Neil Thakur (2020–2024) — Chief Mission Officer
- Former: Sue Gorman (2020–2024) — Immediate Past Chair
- Former: Tina Zeff (2020–2024) — Chief Operations Officer
- Former: Tom Carroll (2020–2024) — Trustee
- Former: Warren Nelson (2020–2024) — Trustee
- Former: Wendy J. Schriber (2020–2024) — Trustee
- Former: David Van De Riet (2021–2024) — Trustee
- Former: Jinsy Andrews (2021–2024) — Trustee
- Former: Kenneth Menkhaus (2021–2024) — Trustee
- Former: Kevin Spinella (2021–2024) — Trustee
- Former: Kuldip Dave (2021–2024) — Senior Vice President Rese
- Former: Dean Feener (2022–2024) — Chief Information & Marketing Officer
- Former: John Robinson (2022–2024) — Trustee
- Former: Paul Ingholt (2022–2024) — Trustee
- Former: Keith Gary (2023–2024) — Vice President Mission Acceleration
- Former: Kenton Van Harten (2023–2024) — Trustee
- Former: Vickie Lobello (2023–2024) — Senior Vice President Org Change
- Former: Clifton Gooch MD (2020–2023) — Trustee
- Former: Tobin M. Kucharski (2020–2023) — Trustee
- Former: Amy Brachio (2023) — Trustee
- Former: John Rocky Dallum (2023) — Trustee
- Former: Kathleen Boyce (2023) — Trustee
- Former: Ken Baltes (2023) — Trustee
- Former: Keith A. Gary Ph D. (2020–2022) — Trustee
- Former: Kimberly Harding-Maginnis (2020–2022) — Senior Vice President & Care Services
- Former: Teressa Harris (2020–2022) — Senior Vice President & Finance
- Former: Cameron Ward (2020–2021) — Secretary
- Former: Don Casey (2020–2021) — Trustee
- Former: Stuart Obermann (2020–2021) — Trustee
- Former: William Thoett (2021) — Trustee
- Former: Kathleen Sheehan (2020) — Vice President, Public Policy & Advocacy
- Former: Lyles Eddins (2020) — Vice President & Development
- Former: Mary Morgan Roth (2020) — Vice President & Communications
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 2024 IRS filing
The highest reported compensation on the 2024 filing was $481K, to Calaneet Balas (President and CEO). 11 officers or directors reported compensation on that filing.
Contact
Mailing address: 1300 Wilson Blvd 600, Arlington, VA 22209
Phone: (202) 407-8580
Website: https://als.org
Frequently asked questions about Amyotrophic Lateral Sclerosis Assn
How much does Amyotrophic Lateral Sclerosis Assn give each year?
Amyotrophic Lateral Sclerosis Assn gave $11.9M across 185 grants in 2025, according to its 2025 IRS Form 990. The 2025 filing year covers 17 months because its fiscal year-end changed. In 2024 it gave $15.1M across 159 grants.
What is Amyotrophic Lateral Sclerosis Assn's typical grant size?
Amyotrophic Lateral Sclerosis Assn's median grant in 2025 was $25,000, and its average grant was $64,165, across 185 grants on its 2025 IRS Form 990. Organizations receiving their first grant from Amyotrophic Lateral Sclerosis Assn that year got $90K on average.
Where does Amyotrophic Lateral Sclerosis Assn give grants?
Amyotrophic Lateral Sclerosis Assn's top state is Florida, with 22% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were California (12%) and Minnesota (9%). The most frequent recipient cities were Los Angeles, CA (11 grants), Chicago, IL (7 grants), New York, NY (6 grants) and Ft Lauderdale, FL (5 grants).
Does Amyotrophic Lateral Sclerosis Assn give general operating support?
Not in 2025: none of the 185 grants with a stated purpose on Amyotrophic Lateral Sclerosis Assn's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "Annual Grant Payment FY25 Center of Excellence/Research" (46 grants), "Annual Grant Payment FY25 Recognized Treatment Center" (14 grants) and "Annual Grant FY25" (14 grants).
Who are Amyotrophic Lateral Sclerosis Assn's largest grantees?
Amyotrophic Lateral Sclerosis Assn's largest 2025 grantees include University of Miami ($794,619 across 2 grants), University Medical Service Association Inc ($667,242 across 2 grants) and Mayo Clinic Florida ($558,620 across 3 grants), according to its 2025 IRS Form 990. Together they received 17% of its itemized 2025 grant dollars.
How large is Amyotrophic Lateral Sclerosis Assn?
Amyotrophic Lateral Sclerosis Assn reported $100.4M in total assets on its 2025 IRS Form 990. Its revenue that year was $89.5M.
What does Amyotrophic Lateral Sclerosis Assn fund?
The organization states its mission as “leading the fight to cure and treat ALS through research, advocacy and care services.” See mission & focus areas ↑
How do I apply for a grant from Amyotrophic Lateral Sclerosis Assn?
For the listed research opportunities, submit an LOI; a full proposal is by invitation only. Eligibility and process details are in the grantmaking section of this profile. See how to apply ↑
What is Amyotrophic Lateral Sclerosis Assn's EIN?
Amyotrophic Lateral Sclerosis Assn's EIN (Employer Identification Number) is 13-3271855. IRS Form 990 filing data is available on this page for 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings. Research dossier generated September 2026.
Here's the math on researching Amyotrophic Lateral Sclerosis Assn by hand.
Explore Open Grants
Browse active grant opportunities in Amyotrophic Lateral Sclerosis Assn's focus areas in our free grants database
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