Skip to main content

Nonprofit · EIN 13-1665552

MUSCULAR DYSTROPHY ASSOCIATION

Tax-exempt · CHICAGO, IL 60601

Financials

$59.4M$62.1M2023$60.4M$66M2024$64.2M$61.7M2025
Revenue Expenses · by fiscal year end
Financials of MUSCULAR DYSTROPHY ASSOCIATION by year, from its e-filed returns
Year endedFormRevenueExpensesNet incomeTotal assetsLiabilitiesNet assets
December 31, 2025990$64,160,032$61,748,106$2,411,926$50,874,216$41,176,797$9,697,419
December 31, 2024990$60,356,244$65,965,386-$5,609,142$57,971,496$54,536,026$3,435,470
December 31, 2023990$59,437,892$62,127,770-$2,689,878$66,561,388$58,167,552$8,393,836
Financial details: 990 for the year ended December 31, 2025

Revenue

Contributions, gifts and grants
$54,355,588
of which government grants
$193,656
Program service revenue
$0
Investment income
$4,498,056
Royalties
$6,063,508
Net rental income
$4,250
Net gain from sales of assets
$3,460,578
Net income from fundraising events
-$1,416,058
Other revenue
$5,306,388

Expenses

Grants and similar amounts paid
$14,147,711
Compensation of officers, directors and key employees
$2,040,172
Other salaries and wages
$20,884,236
Salaries, compensation and benefits (total)
$29,175,286
Professional fundraising fees
$1,152,729
Legal fees
$300,691
Accounting fees
$130,450
Occupancy
$105,641
Travel
$2,228,542
Depreciation
$657,418
Program services (functional)
$43,809,908
Management and general (functional)
$3,179,216
Fundraising (functional)
$14,758,982

Balance sheet and other

Total assets, start of year
$57,971,496
Total assets, end of year
$50,874,216
Total liabilities, end of year
$41,176,797
Net assets, end of year
$9,697,419
Land, buildings and equipment
$391,615
Publicly traded securities
$35,421,745
Net assets without donor restrictions
$4,359,739
Net assets with donor restrictions
$5,337,680
Gross unrelated business income
$654,688
Gross receipts
$86,702,830
Employees
272
Volunteers
934
Year formed
1950
State of legal domicile
NY

From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.

Officers, directors and key employees

As listed on the 990 for the year ended December 31, 2025, highest compensation first.

NameTitleHours / weekCompensationOther / benefits
DONALD WOODOUTGOING PRESIDENT & CEO
Officer
50$662,437$17,405
SHARON HESTERLEEPRESIDENT & CEO
Officer
50$421,661$70,765
HENRY LANMANCOO & CHIEF LEGAL OFFICER
Officer
50$380,303$56,441
RUTH DAILEYCHIEF DEVELOPMENT OFFICER
Highest-paid employee
50$304,413$29,955
MARY ROTHCHIEF MARKETING OFFICER
Highest-paid employee
50$259,355$54,791
JON VAN COTTINTERIM CFO & CONTROLLER
Key employee
50$213,151$48,058
NORA CAPOCCIEVP, HEALTHCARE SERVICES
Highest-paid employee
50$227,925$24,094
PERIPEDES GONDIMOUTGOING EVP, HR & VOLUNTEERS
Highest-paid employee
50$235,864$15,493
ANGELA LEKCHIEF RESEARCH OFFICER
Highest-paid employee
50$221,940$13,910
MICHAEL KENNEDYOUTGOING TREASURER & CFO
Officer
50$158,297$11,653
ANJAN ARALIHALLIDIRECTOR
Trustee or director
1$0$0
BARRY BYRNE MD PHDDIRECTOR
Trustee or director
1$0$0
BENJAMIN CUMBO IIIDIRECTOR
Trustee or director
1$0$0
CHARLES D SCHOOR ESQDIRECTOR
Trustee or director
1$0$0
CHRISTOPHER ROSAVICE CHAIRMAN
Trustee or director, Officer
5$0$0
14 more people on this return
NameTitleHours / weekCompensation
DAN FRIESDIRECTOR
Trustee or director
1$0
ELIZABETH MCNALLY MD PHDDIRECTOR
Trustee or director
1$0
GOVERNOR BRAD HENRYCHAIRMAN
Trustee or director, Officer
5$0
HON ROBERT E PIPIADIRECTOR
Trustee or director
1$0
JOHN COSTANTINODIRECTOR
Trustee or director
1$0
JOHN E HOWELLDIRECTOR
Trustee or director
1$0
LILIAN WU PHDDIRECTOR
Trustee or director
1$0
LOUIS KUNKEL PHDDIRECTOR
Trustee or director
1$0
MARK SMITHDIRECTOR
Trustee or director
1$0
MATT PLUMMERDIRECTOR
Trustee or director
1$0
MIKE ROWLETTOUTGOING DIRECTOR
Trustee or director
1$0
NANCY KINDELANDIRECTOR
Trustee or director
1$0
STEVE FURNARYDIRECTOR
Trustee or director
1$0
TOM SIMONDIRECTOR
Trustee or director
1$0
990 for the year ended December 31, 2024: 28 people
NameTitleHours / weekCompensationOther / benefits
DONALD WOODPRESIDENT & CEO
Officer
50$634,139$33,459
MICHAEL KENNEDYTREASURER & CFO
Officer
50$445,354$65,017
HENRY LANMANSEC. & CHIEF LEGAL OFFICER
Officer
50$372,458$31,094
SHARON HESTERLEECHIEF RESEARCH OFFICER
Highest-paid employee
50$285,786$62,493
RUTH DAILEYCHIEF DEVELOPMENT OFFICER
Highest-paid employee
50$279,285$28,857
PERIPEDES GONDIMVP, HUMAN RESOURCES & VOLUNTEERS
Highest-paid employee
50$268,301$31,071
MARY ROTHCHIEF MARKETING OFFICER
Highest-paid employee
50$241,889$48,436
NORA CAPOCCIVP, HEALTHCARE SERVICES
Highest-paid employee
50$235,784$23,594
ANJAN ARALIHALLIDIRECTOR
Trustee or director
1$0$0
BARRY BYRNE MD PHDDIRECTOR
Trustee or director
1$0$0
BENJAMIN CUMBO IIIDIRECTOR
Trustee or director
1$0$0
CHARLES D SCHOOR ESQDIRECTOR
Trustee or director
1$0$0
CHRIS ROSA PHDVICE CHAIRMAN
Trustee or director, Officer
5$0$0
DAN FRIESDIRECTOR
Trustee or director
1$0$0
ELIZABETH MCNALLY MD PHDDIRECTOR
Trustee or director
1$0$0
GOVERNOR BRAD HENRYCHAIRMAN
Trustee or director, Officer
5$0$0
HON ROBERT E PIPIADIRECTOR
Trustee or director
1$0$0
JENNIFER GOTTLIEBDIRECTOR
Trustee or director
1$0$0
JOHN COSTANTINODIRECTOR
Trustee or director
1$0$0
JOHN E HOWELLDIRECTOR
Trustee or director
1$0$0
LILIAN WU PHDDIRECTOR
Trustee or director
1$0$0
LOUIS KUNKEL PHDDIRECTOR
Trustee or director
1$0$0
MARK SMITHDIRECTOR
Trustee or director
1$0$0
MATT PLUMMERDIRECTOR
Trustee or director
1$0$0
MIKE ROWLETTDIRECTOR
Trustee or director
1$0$0
NANCY KINDELANDIRECTOR
Trustee or director
1$0$0
STEVE FURNARYDIRECTOR
Trustee or director
1$0$0
TOM SIMONDIRECTOR
Trustee or director
1$0$0
990 for the year ended December 31, 2023: 29 people
NameTitleHours / weekCompensationOther / benefits
DONALD WOODPRESIDENT & CEO
Officer
50$490,624$33,322
MICHAEL KENNEDYTREASURER & CFO
Officer
50$334,979$44,280
HENRY LANMANSEC. & CHIEF LEGAL OFFICER
Officer
50$357,404$10,494
SHARON HESTERLEECHIEF RESEARCH OFFICER
Highest-paid employee
50$237,040$40,391
PERIPEDES GONDIMVP, HUMAN RESOURCES & VOLUNTEERS
Highest-paid employee
50$223,723$7,136
NORA CAPOCCIVP, HEALTHCARE SERVICES
Highest-paid employee
50$198,041$6,577
MONICA PAPPASVP, TECHNOLOGY
Highest-paid employee
50$195,958$5,091
ANGELA LEKVP, RESEARCH
Highest-paid employee
50$194,037$6,392
ANJAN ARALIHALLIDIRECTOR
Trustee or director
1$0$0
ANKUR GHIAOUTGOING DIRECTOR
Trustee or director
1$0$0
BENJAMIN CUMBO IIIDIRECTOR
Trustee or director
1$0$0
CHARLES D SCHOOR ESQDIRECTOR
Trustee or director
1$0$0
CHRIS ROSAVICE CHAIRMAN
Trustee or director, Officer
5$0$0
DAN FRIESDIRECTOR
Trustee or director
1$0$0
ELIZABETH MCNALLY MD PHDDIRECTOR
Trustee or director
1$0$0
EUGENE WILLIAMSOUTGOING DIRECTOR
Trustee or director
1$0$0
GOVERNOR BRAD HENRYCHAIRMAN
Trustee or director, Officer
5$0$0
HON ROBERT E PIPIADIRECTOR
Trustee or director
1$0$0
JENNIFER GOTTLIEBDIRECTOR
Trustee or director
1$0$0
JOHN COSTANTINODIRECTOR
Trustee or director
1$0$0
JOHN E HOWELLDIRECTOR
Trustee or director
1$0$0
LILIAN WU PHDDIRECTOR
Trustee or director
1$0$0
LOUIS KUNKEL PHDDIRECTOR
Trustee or director
1$0$0
MARK SMITHDIRECTOR
Trustee or director
1$0$0
MATT PLUMMERDIRECTOR
Trustee or director
1$0$0
MIKE ROWLETTDIRECTOR
Trustee or director
1$0$0
NANCY KINDELANDIRECTOR
Trustee or director
1$0$0
STEVE FURNARYDIRECTOR
Trustee or director
1$0$0
TOM SIMONDIRECTOR
Trustee or director
1$0$0

Address and contacts

Address (IRS master file)
161 N CLARK ST STE 3550, CHICAGO, IL 60601-3333
In care of
% JENNIFER BUZALSKIVP FINANCE
Principal officer (990 for 2025)
SHARON HESTERLEE PHD, 1016 W JACKSON BLVD 1073, CHICAGO, IL 60607
Signed the 990
SHARON HESTERLEE PHD, COO & CHIEF LEGAL OFFICER
Phone
(312) 260-5900
Return prepared by
COHNREZNICK ADVISORY LLC

Mission

MUSCULAR DYSTROPHY ASSOCIATION (MDA) IS THE #1 VOLUNTARY HEALTH ORGANIZATION IN THE UNITED STATES FOR PEOPLE LIVING WITH MUSCULAR DYSTROPHY, ALS, AND RELATED NEUROMUSCULAR DISEASES. (CONT. SCHEDULE O) FOR OVER 70 YEARS, MDA HAS LED THE WAY IN ACCELERATING RESEARCH, ADVANCING CARE, AND ADVOCATING FOR THE SUPPORT OF OUR FAMILIES. MDA'S MISSION IS TO EMPOWER THE PEOPLE WE SERVE TO LIVE LONGER, MORE INDEPENDENT LIVES.

990 for the year ended December 31, 2025

Program accomplishments

  • HEALTH CARE AND COMMUNITY SERVICES: MDA IS COMMITTED TO EMPOWERING PEOPLE LIVING WITH MUSCULAR DYSTROPHY, ALS AND RELATED NEUROMUSCULAR DISEASES THROUGH RESEARCH, CARE, AND ADVOCACY. AS THE LARGEST SOURCE OF FUNDING FOR NEUROMUSCULAR DISEASE RESEARCH OUTSIDE OF THE FEDERAL GOVERNMENT MDA HAS COMMITTED MORE THAN $1 BILLION TO ACCELERATE THE DISCOVERY OF THERAPIES AND CURES. WE SUPPORT THE LARGEST NETWORK OF MULTIDISCIPLINARY CLINICS AT MORE THAN 150 TOP MEDICAL INSTITUTIONS, SERVE THE COMMUNITY WITH ONE-ON-ONE SPECIALIZED SUPPORT, AND OFFER EDUCATIONAL CONFERENCES, EVENTS, AND MATERIALS FOR FAMILIES AND HEALTHCARE PROVIDERS. (CONT. SCHEDULE O)EACH OF OUR MDA CARE CENTERS OFFERS INDIVIDUALS AND FAMILIES BEST-IN-CLASS, COMPREHENSIVE CARE FROM AN INTEGRATED MULTIDISCIPLINARY TEAM OF HEALTHCARE SPECIALISTS CONVENIENTLY SITED AT ONE LOCATION. IN A SINGLE DAY, PATIENTS CAN SEE MULTIPLE HEALTHCARE PROVIDERS WHO WORK TOGETHER TO ENSURE COORDINATED INDIVIDUAL CARE FOR EVERY PATIENT TO BEST FIT THEIR SPECIFIC NEEDS. HIGHLY TRAINED MDA CARE SPECIALISTS SERVE AS AN IMPORTANT PART OFTHE CARE TEAM, HELPING FAMILIES NAVIGATE THE HEALTH SYSTEM, ANSWERING QUESTIONS, DISTRIBUTING MDA EDUCATIONAL MATERIALS, COORDINATING MDA SERVICES, AND ASSISTING WITH COMMUNITY RESOURCE REFERRALS. EACH YEAR THOUSANDS OF CHILDREN/YOUNG ADULTS LEARN VITAL LIFE SKILLS AND GAIN INDEPENDENCE AT SUMMER CAMP AND THROUGH RECREATIONAL PROGRAMS, AT NO COST TO FAMILIES. EACH CAMP IS STAFFED WITH DEDICATED HEALTH PROFESSIONALS AND TRAINED CAMP VOLUNTEERS WHO MEET THE MEDICAL AND PHYSICAL NEEDS OF EACH CAMPER ALL AT NO COST TO FAMILIES.
    Expenses $21,968,472 · grants $7,228,714
  • RESEARCH: MDA IS THE LARGEST NON-GOVERNMENTAL FUNDER OF NEUROMUSCULAR DISEASE RESEARCH IN THE COUNTRY, SUPPORTING STRATEGIC RESEARCH FOR MUSCULAR DYSTROPHY, ALS, AND RELATED NEUROMUSCULAR DISEASES. SINCE ITS INCEPTION IN 1950, MDA HAS INVESTED MORE THAN $1 BILLION IN NEUROMUSCULAR DISEASE RESEARCH TO UNCOVER NEW TREATMENTS. A SINGLE BREAKTHROUGH CAN LEAD TO A CURE. OUR FUNDING RESEARCH ACROSS MANY NEUROMUSCULAR DISEASES MEANS FINDINGS FROM ONE DISEASE OFTEN ENABLE PROGRESS IN OTHERS, MAXIMIZING THE SPEED AT WHICH WE CAN MAKE PROGRESS. SUPPORT FOR MDA'S RESEARCH ENABLES MDA TO FUND LEADING RESEARCH TEAMS WORKING TOWARD BREAKTHROUGH THERAPIES, WHICH CAN HAVE A LIFE-CHANGING IMPACT ON PATIENTS. (CONT. SCHEDULE O)MDA-FUNDED BREAKTHROUGHS INCLUDE DRUGS FOR AMYOTROPHIC LATERAL SCLEROSIS (ALS), DUCHENNE MUSCULAR DYSTROPHY (DMD), PERIODIC PARALYSIS, POMPE DISEASE, AND SPINAL MUSCULAR ATROPHY (SMA). MDA LAUNCHED THE MOVR (NEUROMUSCULAR OBSERVATIONAL RESEARCH) DATA HUB AS A TRANSFORMATIVE PLATFORM, COMBINING MDA'S CARE CENTER NETWORK WITH A STATE-OF-THE-ART INFORMATION-MANAGEMENT SYSTEM. AS THE LARGEST CENTRALIZED DATA HUB FOR MULTIPLE NEUROMUSCULAR DISEASES, MOVR AGGREGATES CLINICAL, GENETIC, AND PATIENT-REPORTED DATA ACROSS BROAD COMMUNITIES OF HEALTHCARE PROVIDERS, RESEARCHERS, AND INDUSTRY PARTNERS THAT WILL LEAD TO RAPID DEVELOPMENTS IN PATIENT CARE, TREATMENTS, AND CURES.
    Expenses $7,773,027 · grants $6,893,247
  • PROFESSIONAL AND PUBLIC HEALTH EDUCATION:MDA OFFERS A BROAD AND EXPANDING ARRAY OF RESOURCES AND EVENTS EXPERTLY DEVELOPED TO RESPOND TO THE RAPIDLY CHANGING TREATMENT LANDSCAPE. OUR RESOURCES FOR PROVIDING RELEVANT MEDICAL EDUCATION TO PROFESSIONALS ARE UNPARALLELED AND OUR SERVICES AND INITIATIVES REFLECT OUR LEADERSHIP IN THIS AREA. WE PROVIDE BOTH ACCREDITED CONTINUING MEDICAL EDUCATION (CME) AND NON-CME PROGRAMS. AS THE MOST COMPREHENSIVE NEUROMUSCULAR DISEASE MEETING IN THE WORLD, OUR ANNUAL MDA CLINICAL & SCIENTIFIC CONFERENCE PROVIDES A UNIQUE OPPORTUNITY TO LEARN FROM, BE INSPIRED BY, AND SHARE IDEAS WITH EXPERTS FROM ACADEMIA, GOVERNMENT, AND INDUSTRY. (CONT. SCHEDULE O)AT THE COMMUNITY LEVEL, WE ESTABLISHED MDA ENGAGE AND MDA ACCESS EDUCATIONAL EVENT SERIES THAT BRINGS LOCAL HIGH-IMPACT EDUCATIONAL PROGRAMS TO THE NEUROMUSCULARCOMMUNITY IN-PERSON AND VIRTUALLY. EACH OF THE ENGAGE PROGRAMS INCORPORATES MULTIPLE MODULES OF INTEREST, FROM THERAPY DEVELOPMENT ROUNDTABLES TO DISEASE MANAGEMENT TO GENETIC TESTING, DESIGNED SPECIFICALLY FOR COMMUNITY AUDIENCES. EACH EVENT ALSO INCLUDES A SOCIAL ELEMENT FOR FAMILIES AND PARTICIPANTS WITH THE AIM OF STRENGTHENING THE COMMUNITY AND HELPING ATTENDEES MAKE PERSONAL CONNECTIONS.
    Expenses $14,068,409 · grants $25,750

What it must file and when

IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.

Tax yearYear endedDueIRS public records
2025December 31, 2025May 15, 2026990 on file
2024December 31, 2024May 15, 2025990 on file
2023December 31, 2023May 15, 2024990 on file

IRS record

EIN
13-1665552
Tax-exempt status
501(c)(3): Charitable, religious, educational or scientific organization
Foundation status
Publicly supported organization (170(b)(1)(A)(vi))
Donations deductible (Pub 78)
Public charity, 50% deduction limit
Exempt since
1952
Accounting year ends
December
Files
Form 990 or 990-EZ
Assets (IRS master file)
$50,874,216
Income (IRS master file)
$86,702,830

Filing history

FormYear endedRevenueExpensesAssetsReturn
990December 2025$64,160,032$61,748,106$50,874,216IRS
990-TDecember 2025–––IRS
990December 2024$60,356,244$65,965,386$57,971,496IRS
990-TDecember 2024–––IRS
990December 2023$59,437,892$62,127,770$66,561,388XML
990-TDecember 2023–––IRS
990December 2022$63,227,837$58,970,307$64,403,820IRS
990-TDecember 2022–––IRS
990December 2021–––IRS
990-TDecember 2021–––IRS
990December 2020–––IRS
990-TDecember 2020–––IRS
990December 2018–––IRS
990December 2017–––IRS

990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 13-1665552).

Questions about MUSCULAR DYSTROPHY ASSOCIATION

What is the EIN of MUSCULAR DYSTROPHY ASSOCIATION?
The employer identification number (EIN) of MUSCULAR DYSTROPHY ASSOCIATION is 13-1665552.
Is MUSCULAR DYSTROPHY ASSOCIATION tax-exempt?
Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1952.
Are donations to MUSCULAR DYSTROPHY ASSOCIATION tax-deductible?
Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
Which annual return does MUSCULAR DYSTROPHY ASSOCIATION file?
Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
When is the next return of MUSCULAR DYSTROPHY ASSOCIATION due?
The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
When did MUSCULAR DYSTROPHY ASSOCIATION last file with the IRS?
The latest return in the IRS public files is the 990 for the year ended December 2025.
Who is the principal officer of MUSCULAR DYSTROPHY ASSOCIATION?
The 990 for the year ended December 31, 2025 names SHARON HESTERLEE PHD.
Who are the officers and directors of MUSCULAR DYSTROPHY ASSOCIATION?
The 990 for the year ended December 31, 2025 lists 29 people; 10 received compensation from the organization, the highest $662,437 (DONALD WOOD, OUTGOING PRESIDENT & CEO).
How much revenue does MUSCULAR DYSTROPHY ASSOCIATION have?
On its 990 for the year ended December 31, 2025 it reported revenue of $64,160,032, expenses of $61,748,106 and total assets of $50,874,216 at year end.

Other nonprofits in CHICAGO

All nonprofits in CHICAGO · Illinois · Voluntary health associations and medical disciplines