Muscular Dystrophy Association Inc
The Muscular Dystrophy Association Inc (MDA) is a Chicago-based public charity whose mission is to empower people living with muscular dystrophy, ALS, and related neuromuscular diseases to live longer, more independent lives. It supports research, care, advocacy, and services for affected individuals and families.
Muscular Dystrophy Association Inc at a glance
In short: Muscular Dystrophy Association Inc gave $12.6M across 193 grants in 2025 (avg $65K), top state California. 10% of 2025 grantees were new. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $12,572,359
- -14.1% vs 2024
- Grants made (2025)
- 193
- +12.2% vs 2024
- Average grant
- $65,142
- -23.4% vs 2024
- Median grant
- $40,000
- Total assets
- $50,874,216
- -12.2% vs 2024
- New grantees (estimate)
- 10% first-time grantees (19 of 190, 2025)
- Primary geography
- California (13% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated October 2026. New grantees are estimated by matching recipient names across years (methodology).
How to apply to Muscular Dystrophy Association Inc
- Contact
Mailing address: 1016 W Jackson Blvd 1073, Chicago, IL 60607
Phone: (312) 260-5900
Website: https://mda.org
Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Open Grants
7 open opportunities from Muscular Dystrophy Association Inc
MDA College Scholarship Program
Muscular Dystrophy Association Inc
Amount
Varies
Deadline
Deadline not published
MDA Development Grants
Muscular Dystrophy Association Inc
Amount
Varies
Deadline
Deadline not published
MDA Durable Medical Equipment Grant Program
Muscular Dystrophy Association Inc
Amount
Varies
Deadline
Deadline not published
Who Muscular Dystrophy Association Inc funds
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2025
The largest 2025 recipient was University of Washington Medical Center ($642K). Together the top 10 received $3.6M.
Organizations only. It also paid 1 grant to individuals ($272,950), which are not listed by name.
Grant Size Distribution
943 grants across all recorded years
The most common grant size was under $50K: 539 grants of 943 (57%).
Geographic Focus
Where this funder awards grants
MDA is based in Chicago, Illinois. Its 2025 grant dollars were distributed across recipient states, with California receiving 13%, New York 10%, Massachusetts 7%, Washington 7%, and Maryland 5%. The listed awards also include recipients in other states and Washington, DC.
Grant Distribution by State
Share of 2025 grant dollars across all 193 itemized grants.
States
Cities
Is Muscular Dystrophy Association Inc open to new grantees?
10%
first-time grantees, 2025
In 2025, 19 of 190 grantees (10%) were first-time recipients. First grants averaged $78K; repeat grants $65K. How we count
Medians: $33K first-time, $40K repeat.
- 71% of 2025 grantees were also funded in 2024. Method
- Giving held roughly steady from 2022 to 2025 (+7%). 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
From 2020 to 2025, annual grant giving ranged from $11.8M (2022) to $14.6M (2024). In 2025 it made 193 grants totaling $12.6M.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of Washington Medical Center Seattle, WA | Medical Diagnosis | $641,819 |
| Johns Hopkins University- CG Baltimore, MD | Medical Diagnosis and Research | $578,750 |
| The Regents of the University of California Los Angeles La Jolla, CA | Medical Diagnosis Research and Movr Registry Support | $410,998 |
| University of Rochester - Rochester, NY | Research | $398,910 |
| Massachusetts General Hospital Boston, MA | Medical Diagnosis and Research | $377,699 |
| 1 grant to individuals Recipients not named | — | $272,950 |
| Children's Research Institute (CNMC) Washington, DC | Research | $258,963 |
| The Trustees of Columbia University in the City of New York New York, NY | Research | $250,000 |
| University of Kansas Medical Center Research Institute Inc Kansas City, KS | Medical Diagnosis and Movr Registry Support | $206,922 |
| Columbia University Medical Center New York, NY | Research | $196,318 |
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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 | $50,874,216 | $64,160,032 | $61,748,106 | $12,572,359 | 193 | $4,498,056 |
| 2024 | $57,971,496 | $60,356,244 | $65,965,386 | $14,629,140 | 172 | $5,248,735 |
| 2023 | $66,561,388 | $59,437,892 | $62,127,770 | $13,063,457 | 205 | $2,236,376 |
| 2022 | $64,403,820 | $63,227,837 | $58,970,307 | $11,778,806 | 206 | $3,244,992 |
| 2021 | $75,564,994 | $63,393,990 | $53,419,636 | $12,181,260 | 167 | $3,151,404 |
| 2020 | $71,915,435 | $63,707,273 | $68,372,442 | $12,692,085 | 163 | $14,247,084 |
Research compiled by Grantable AI from public sources. Last updated October 2026.
Mission & Focus Areas
MDA’s stated mission is to empower people it serves to live longer, more independent lives. Its research program supports work across the drug-development pipeline, from discovery research through clinical trials, with an emphasis on therapy development and barriers to developing therapies. MDA also says it aims to foster new investigators, encourage company engagement in neuromuscular research, and use its MOVR Data Hub to support research and care.
MDA’s 2025 filing describes programs in health care and community services, research, and professional and public health education. It reports supporting more than 150 medical institutions through its care-center network and offering family and provider education. MDA describes MOVR as a data hub combining clinical, genetic, and patient-reported data across neuromuscular diseases.
The 2025 grantees illustrate the range of recipient organizations. MDA’s grant purposes included research, medical diagnosis, and MOVR registry support. Johns Hopkins University describes itself as a research university conducting work across disciplines including medicine and public health. The University of Rochester describes its activities as including higher education, research, and charitable patient care. Children’s Research Institute says it conducts and promotes translational and clinical medical research and education focused on childhood disease. The University of Kansas Medical Center Research Institute says it supports the research, education, and service functions of the medical center.
Grantmaking
In filing year 2025, MDA reported 193 grants totaling $12,572,359. Grant amounts ranged from $6,025 to $641,819, with a median of $40,000. Its largest reported grants included $641,819 to the University of Washington Medical Center for medical diagnosis; $578,750 to Johns Hopkins University for medical diagnosis and research; $410,998 to the Regents of the University of California Los Angeles for medical diagnosis, research, and MOVR registry support; $398,910 to the University of Rochester for research; and $377,699 to Massachusetts General Hospital for medical diagnosis and research.
MDA’s website describes research funding opportunities for academic investigators and for biotech and pharmaceutical companies developing neuromuscular disease therapies. Its 2027 funding-opportunities page describes SPARK, a collaborative program supporting projects addressing scientific and translational challenges relevant to multiple neuromuscular diseases, with up to $500,000 available per selected project. The listed MDA College Scholarship Program provides assistance to students with covered neuromuscular diseases pursuing higher education; it is participant support rather than a grant program for outside organizations.
MDA says research proposals are reviewed by two to three experts, often members of its Research Advisory Committee. Its research-grants policy says applications are submitted through ProposalCentral by eligible applicants, under the requirements for the relevant grant mechanism. Before funds are disbursed, grantees must return a signed notice of award and provide current regulatory documents needed to conduct the research. Continued funding depends on MDA’s approval of annual progress and expenditure reports; some translational awards make payments contingent on milestones.
Leadership & Key People
Leadership team and compensation from IRS filings
The 2025 filing lists Governor Brad Henry as chairman and Christopher Rosa as vice chairman. Directors listed are Anjan Aralihalli, Barry Byrne MD PhD, Benjamin Cumbo III, Charles D Schoor Esq, Dan Fries, Elizabeth McNally MD PhD, Hon Robert E Pipia, and John Costantino.
Muscular Dystrophy Association Inc is led by Donald Wood, Outgoing President & CEO since 2025 (on filings since 2020); 10 of 29 officers listed in 2025 are compensated.
Officers on the 2025 filing
Donald Wood
Outgoing President & CEO
President & CEO → Outgoing President & CEO, 2025
On filings since 2020
50 hrs/week
$15K (2020) → $662K (2025)
Sharon Hesterlee
President & CEO
Chief Research Officer → President & CEO, 2025
On filings since 2020
50 hrs/week
$215K (2020) → $422K (2025)
Governor Brad Henry
Chairman
Vice Chair → Chairman, 2022
On filings since 2020
5 hrs/week
No compensation reported
Anjan Aralihalli
Director
On filings since 2020
1 hr/week
No compensation reported
Benjamin Cumbo III
Director
On filings since 2020
1 hr/week
No compensation reported
Charles D. Schoor Esq.
Director
On filings since 2020
1 hr/week
No compensation reported
Elizabeth McNally MD PhD
Director
On filings since 2020
1 hr/week
No compensation reported
John Costantino
Director
On filings since 2020
1 hr/week
No compensation reported
John E. Howell
Director
On filings since 2020
1 hr/week
No compensation reported
Lilian Wu PhD
Director
On filings since 2020
1 hr/week
No compensation reported
Louis Kunkel PhD
Director
On filings since 2020
1 hr/week
No compensation reported
Mark Smith
Director
On filings since 2020
1 hr/week
No compensation reported
Robert E. Pipia
Director
On filings since 2020
1 hr/week
No compensation reported
Dan Fries
Director
On filings since 2021
1 hr/week
No compensation reported
Matt Plummer
Director
On filings since 2021
1 hr/week
No compensation reported
Nancy Kindelan
Director
On filings since 2021
1 hr/week
No compensation reported
Mike Rowlett
Outgoing Director
Director → Outgoing Director, 2025
On filings since 2023
1 hr/week
No compensation reported
Steve Furnary
Director
On filings since 2023
1 hr/week
No compensation reported
Tom Simon
Director
On filings since 2023
1 hr/week
No compensation reported
Barry Byrne MD PhD
Director
On filings since 2024
1 hr/week
No compensation reported
Michael Kennedy
Outgoing Treasurer & CFO
Treasurer & CFO → Outgoing Treasurer & CFO, 2025
On filings since 2020
50 hrs/week
$281K (2020) → $158K (2025)
Angela Lek
Chief Research Officer
Vice President & Research → Chief Research Officer, 2025
On filings since 2022
50 hrs/week
$187K (2022) → $222K (2025)
Henry Lanman
COO & Chief Legal Officer
Secretary & Chief Legal Officer → COO & Chief Legal Officer, 2025
On filings since 2022
50 hrs/week
$189K (2022) → $380K (2025)
Nora Capocci
Executive Vice President & Healthcare Services
Vice President & Healthcare Services → Executive Vice President & Healthcare Services, 2025
On filings since 2023
50 hrs/week
$198K (2023) → $228K (2025)
Peripedes Gondim
Outgoing Executive Vice President, Hr & Volunteers
Vice President, Human Resources & Volunteers → Outgoing Executive Vice President, Hr & Volunteers, 2025
On filings since 2023
50 hrs/week
$224K (2023) → $236K (2025)
Mary Roth
Chief Marketing Officer
On filings since 2024
50 hrs/week
$242K (2024) → $259K (2025)
Ruth Dailey
Chief Development Officer
On filings since 2024
50 hrs/week
$279K (2024) → $304K (2025)
Jon Van Cott
Interim CFO & Controller
New on the 2025 filing
50 hrs/week
$213K (2025)
Christopher Rosa
Vice Chairman
New on the 2025 filing
5 hrs/week
No compensation reported
Former officers (23)
- Former: Jennifer Gottlieb (2020–2024) — Director
- Former: Chris Rosa PhD (2021–2024) — Vice Chairman
- Former: Ankur Ghia (2020–2023) — Outgoing Director
- Former: Eugene Williams (2020–2023) — Outgoing Director
- Former: Monica Pappas (2022–2023) — Vice President & Technology
- Former: Kristine Welker (2020–2022) — Chief of Staff
- Former: Steve Farella (2020–2022) — Outgoing Chairman
- Former: Victor Wright (2020–2022) — Director
- Former: Brian Beirne (2021–2022) — Vice President of Multi-Channel Market
- Former: John Tognino (2020–2021) — Director
- Former: Joshua Ackley (2020–2021) — Vice President of Pr & Communications
- Former: Lindsay Kassof (2020–2021) — Secretary & Associate Legal Counsel
- Former: Kathy Kauffmann Jan-Aug (2021) — Chief Strategy Development
- Former: Deborah Barge (2020) — Senior Vice President & Chief Field Officer
- Former: Ellen Vos (2020) — President & CEO
- Former: Jeanne Zucker (2020) — Senior Vice President Healthcare Partnerships
- Former: Jennifer Allebach (2020) — Senior Vice President of Camp Programs
- Former: Jonathon Nagle (2020) — Chief Technology Officer
- Former: Karen Andrews (2020) — Secretary & Chief Legal Officer
- Former: Kathy Kauffmann (2020) — Chief Strategy Development Officer
- Former: Kristin Stephenson (2020) — Chief Advocacy & Care Services Officer
- Former: Patricia Nazemetz (2020) — Outgoing Director
- Former: Steve Felsher (2020) — Outgoing 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 $662K, to Donald Wood (Outgoing President & CEO). 10 officers or directors reported compensation on that filing.
Frequently asked questions about Muscular Dystrophy Association Inc
How much does Muscular Dystrophy Association Inc give each year?
Muscular Dystrophy Association Inc gave $12.6M across 193 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $14.6M across 172 grants.
What is Muscular Dystrophy Association Inc's typical grant size?
Muscular Dystrophy Association Inc's median grant in 2025 was $40,000, and its average grant was $65,142, across 193 grants on its 2025 IRS Form 990. Organizations receiving their first grant from Muscular Dystrophy Association Inc that year got $78K on average.
Where does Muscular Dystrophy Association Inc give grants?
Muscular Dystrophy Association Inc's top state is California, with 13% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were New York (10%) and Massachusetts (7%). The most frequent recipient cities were Atlanta, GA (7 grants), Los Angeles, CA (7 grants), Boston, MA (6 grants) and New York, NY (5 grants).
Does Muscular Dystrophy Association Inc give general operating support?
Not in 2025: none of the 193 grants with a stated purpose on Muscular Dystrophy Association Inc's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "Medical Diagnosis" (106 grants), "Medical Diagnosis and Research" (35 grants) and "Research" (33 grants).
Who are Muscular Dystrophy Association Inc's largest grantees?
Muscular Dystrophy Association Inc's largest 2025 grantees include University of Washington Medical Center ($641,819), Johns Hopkins University- CG ($578,750) and The Regents of the University of California Los Angeles ($410,998), according to its 2025 IRS Form 990. It also paid 1 grant to individuals ($272,950), which are not listed by name. Together they received 13% of its itemized 2025 grant dollars.
How large is Muscular Dystrophy Association Inc?
Muscular Dystrophy Association Inc reported $50.9M in total assets on its 2025 IRS Form 990. Its revenue that year was $64.2M.
What does Muscular Dystrophy Association Inc fund?
MDA’s stated mission is to empower people it serves to live longer, more independent lives. Its research program supports work across the drug-development pipeline, from discovery research through clinical trials, with an emphasis on therapy development and barriers to developing therapies. See mission & focus areas ↑
How do I apply for a grant from Muscular Dystrophy Association Inc?
Muscular Dystrophy Association Inc has no public application process in the sources Grantable reviewed. Check mda.org for current guidelines, or contact the foundation directly before submitting a request.
What is Muscular Dystrophy Association Inc's EIN?
Muscular Dystrophy Association Inc's EIN (Employer Identification Number) is 13-1665552. IRS Form 990 filing data is available on this page for 2020–2025.
Data last updated October 2026. Sourced from IRS Form 990 filings. Research dossier generated October 2026.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS October 25, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS August 2, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS May 25, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS May 1, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS April 25, 2025)
- Added Form 990 for fiscal year 2025 (received by the IRS May 14, 2026)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work Muscular Dystrophy Association Inc funds
Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in Muscular Dystrophy Association Inc's focus areas in our free grants database
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Cite this profile
Grantable. (2026). Muscular Dystrophy Association Inc funder profile. GrantGraph. Retrieved October 20, 2026, from https://grantable.co/funders/muscular-dystrophy-association-inc-morg_b5f48cd2a3a84201ba300bd7ef8e76ec
BibTeX
@misc{grantable_131665552_2026,
author = {{Grantable}},
title = {{Muscular Dystrophy Association Inc funder profile}},
howpublished = {GrantGraph},
year = {2026},
url = {https://grantable.co/funders/muscular-dystrophy-association-inc-morg_b5f48cd2a3a84201ba300bd7ef8e76ec},
note = {Accessed 2026-10-20. 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 Muscular Dystrophy Association Inc'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.
Muscular Dystrophy Association Inc down — hundreds of funders to go?