Amyotrophic Lateral Sclerosis Assn logo

Amyotrophic Lateral Sclerosis Assn

Public charity · Grantmaker Arlington, VA EIN: 13-3271855 Website

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.

Amyotrophic Lateral Sclerosis Assn at a glance

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.

Annual giving (2025)
$11,870,507
Grants made (2025)
185
Average grant
$64,165
Median grant
$25,000
Total assets
$100,352,304
-21.5% vs 2024
New grantees (estimate)
18% first-time grantees (26 of 144, 2025)
Primary geography
Florida (22% of itemized 2025 grant dollars)
Latest 990 filing
Form 990, 2025 View filing

Data from IRS Form 990, 2025; updated September 2026. Covers 17 months (fiscal year-end changed). New grantees are estimated by matching recipient names across years (methodology).

How to apply to Amyotrophic Lateral Sclerosis Assn

Invitation Only

For the listed research opportunities, submit an LOI; a full proposal is by invitation only. Clinic opportunities use separate application processes.

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.
Deadline
October 8, 2026, at 5:00 p.m.
Contact

Mailing address: 1300 Wilson Blvd 600, Arlington, VA 22209
Phone: (202) 407-8580
Website: https://als.org

Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.

Who Amyotrophic Lateral Sclerosis Assn funds

How this funder distributes its grants

Top Recipients

Top 10 recipients in 2025

University of Miami: $795K across 2 grantsUniversity of Miami$795K · 2 grantsUniversity Medical Service Association Inc: $667K across 2 grantsUniversity Medical ServiceAssociation Inc$667K · 2 grantsMayo Clinic Florida: $559K across 3 grantsMayo Clinic Florida$559K · 3 grantsJohns Hopkins University: $437K across 4 grantsJohns Hopkins University$437K · 4 grantsNova Southeastern University: $331K across 3 grantsNova Southeastern University$331K · 3 grantsAmerican Brain Foundation: $323KAmerican Brain Foundation$323KMayo Clinic Arizona: $315K across 3 grantsMayo Clinic Arizona$315K · 3 grantsRegents of the University of Minnesota: $261K across 2 grantsRegents of the University ofMinnesota$261K · 2 grantsThe Regents of the University of California San Francisco: $256K across 3 grantsThe Regents of the Universityof California San Francisco$256K · 3 grantsAsha Therapeutics: $250KAsha Therapeutics$250K

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

437<$50K155$50–100K137$100–250K40$250–500K14$500K–1M5$1–5M$5M+

The most common grant size was under $50K: 437 grants of 788 (55%).

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

46states

Share of 2025 grant dollars across all 185 itemized grants.

Cities

New YorkBostonLos AngelesMinneapolisBaltimorePhiladelphiaAtlantaChicagoSan FranciscoGermantownLa JollaGainesvillePittsburghSaint LouisCambridgeHoustonScottsdaleAnn ArborBurlingtonPortland

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.

Giving History

Giving Over Time

Total grant dollars and number of grants per year

$0$5M$10M$15M$20M221 grants2020 78 grants2021 147 grants2022 219 grants2023 159 grants2024 185 grants2025* Covers 17 months (fiscal year-end changed)

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).

Grants by year

Grant recipients and amounts by year

*2025: Covers 17 months (fiscal year-end changed).

RecipientPurposeAmount
University of Miami Miami, FLBitner Plante Quarterly Grant FY25$652,154
University Medical Service Association Inc Orlando, FLBitner Plante Quarterly Grant FY25$551,417
Mayo Clinic Florida Rochester, MNBitner Plante Quarterly Grant FY25$426,327
American Brain Foundation Minneapolis, MNClinical scientist development award/clinical research training fellowship/shelia essey award$323,000
Asha Therapeutics Tampa, FLDrug Development Contract$250,000
Modulo Bio Inc San Diego, CADrug Development Contract$250,000
Mayo Clinic Arizona Scottsdale, AZQuality of Care Program$250,000
Projenx Inc New York, NYClinical Trial Award$247,700
Nova Southeastern University Fort Lauderdale, FLBitner Plante Quarterly Grant FY25$239,332
Everylife Foundation for Rare Diseases Washington, DCScholarships$210,711
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Financial History

Multi-year comparison from IRS filings

Amounts below are reported by filing year.

The 2024 filing narrative notes that the organization changed its tax year and submitted a short-period Form 990.

Figures from IRS filings, by filing year
Filing yearTotal AssetsRevenueExpensesGrants paidGrantsNet Investment Income
2025*$100,352,304$89,522,152$108,266,321$11,870,507185$2,254,961
2024$127,891,549$126,450,238$98,839,577$15,118,914159$1,597,516
2023$94,445,022$55,567,608$84,199,819$14,912,960219$1,771,537
2022$98,343,083$39,792,803$44,852,298$12,307,984147$2,213,860
2021$100,284,898$35,112,517$38,436,196$10,438,23378$2,132,313
2020$98,033,652$37,031,804$41,808,503$16,879,220221$2,827,122

*2025: Covers 17 months (fiscal year-end changed).

Research compiled by Grantable AI from public sources. Last updated September 2026.

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.

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

Calaneet Balas — President and CEO: $481KCalaneet BalasPresident and CEO$481KTina Zeff — Chief Operations Officer: $397KTina ZeffChief Operations Officer$397KGreg Mitchell — Chief Financial Officer: $291KGreg MitchellChief Financial Officer$291KMonica Santa Cruz — Chief People Officer: $263KMonica Santa CruzChief People Officer$263KDean Feener — Chief Information & Marketing Officer: $262KDean FeenerChief Information & Marketing…$262KNeil Thakur — Chief Mission Officer: $253KNeil ThakurChief Mission Officer$253KLance Slaughter — SVP Strategic Alliances an: $246KLance SlaughterSVP Strategic Alliances an$246KKuldip Dave — Senior Vice President Rese: $234KKuldip DaveSenior Vice President Rese$234KVickie Lobello — Senior Vice President Org Change: $234KVickie LobelloSenior Vice President Org Change$234KBrian Frederick — Senior Vice President Strategic Communications: $233KBrian FrederickSenior Vice President Strategic…$233KKeith Gary — Vice President Mission Acceleration: $221KKeith GaryVice President Mission…$221K

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.

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.

Data update history

(7)

When this profile's IRS filing data changed on Grantable

  1. Updated Form 990 for fiscal year 2020 (received by the IRS June 19, 2020)
  2. Updated Form 990 for fiscal year 2021 (received by the IRS June 15, 2021)
  3. Updated Form 990 for fiscal year 2022 (received by the IRS August 1, 2022)
  4. Updated Form 990 for fiscal year 2023 (received by the IRS December 13, 2023)
  5. Updated Form 990 for fiscal year 2024 (received by the IRS December 13, 2024)
  6. Updated Form 990 for fiscal year 2025 (received by the IRS May 14, 2026)
  7. IRS filings on file for fiscal years 2020–2025

Live grants for the work Amyotrophic Lateral Sclerosis Assn funds

Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.

Explore Open Grants

Browse active grant opportunities in Amyotrophic Lateral Sclerosis Assn's focus areas in our free grants database

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Cite this profile

Grantable. (2026). Amyotrophic Lateral Sclerosis Assn funder profile. GrantGraph. Retrieved October 24, 2026, from https://grantable.co/funders/amyotrophic-lateral-sclerosis-assn-morg_0f382d2b31394103afb7e46fbb128cb2

BibTeX
@misc{grantable_133271855_2026,
  author       = {{Grantable}},
  title        = {{Amyotrophic Lateral Sclerosis Assn funder profile}},
  howpublished = {GrantGraph},
  year         = {2026},
  url          = {https://grantable.co/funders/amyotrophic-lateral-sclerosis-assn-morg_0f382d2b31394103afb7e46fbb128cb2},
  note         = {Accessed 2026-10-24. Data licensed CC BY 4.0}
}

The figures on this page are open data under CC BY 4.0: reuse them with credit to Grantable and a link. Download the data.

Figures come from Amyotrophic Lateral Sclerosis Assn's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.

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