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Governance Register
US nonprofit · EIN 131665552 · Chicago, ILiSource and licenceOrganisation record IRS Exempt Organizations Business Master File (EIN 131665552) - NTEE activity code, address.Board and officers IRS Form 990 annual filings, Part VII (directors, trustees, officers, key employees), read year by year to observe tenure.Latest return IRS Form 990 series e-file data - 990 for the year to 31 December 2025: assets, liabilities, staff, website, telephone, pay, grants paid (Schedule I).Renewal outlook Computed by Governance Register from the observed filing history and filed revenue (us-approach-v4-clean). Not a statement that the organisation is recruiting.Deductibility IRS Publication 78 data (code PC), downloaded 18 October 2026.State registers Colorado Secretary of State (17 October 2026).Licence US Federal Government public domain.How we handle data

Muscular Dystrophy Association's network

21 people8 organisationsi21 people and 8 organisations on this map.The large node is the subject of this page. Solid lines are what the register itself records (21). Violet dotted lines (8) are likely: the same full name sits on the current board of another organisation in the same register and region. Form 990 filings give names without a person identifier; SEC insider filings carry a CIK. It may be a different person.

The board

21 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations in the tables. The network map shows same-name matches as likely links only, never as confirmed.Tenure and departures are observed across annual filings. Observed tenure is a lower bound - a member may have joined before the first year on record. The organisation reported 19 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.
NameRole as filedSinceOn the board
Governor Brad Henry ChairChairman2018
8 yrs
Anjan AralihalliDirector2019
7 yrs
Ankur GhiaOutgoing Director2019
7 yrs
Benjamin Cumbo IIIDirector2018
8 yrs
Charles D Schoor ESQDirector2018
8 yrs
Christopher J Rosa PHD (also filed as Chris Rosa)Vice Chairman2018
8 yrs
Daniel G Fries (also filed as Dan Fries)Director2018
8 yrs
Elizabeth McNally MD PHDDirector2019
7 yrs
Eugene WilliamsOutgoing Director2018
8 yrs
Hon Robert E PipiaDirector2020
6 yrs
Jennifer GottliebDirector2020
6 yrs
John CostantinoDirector2018
8 yrs
John E HowellDirector2020
6 yrs
Lilian WU PHDDirector2018
8 yrs
Louis Kunkel PHDDirector2018
8 yrs
Mark SmithDirector2019
7 yrs
Matt PlummerDirector2021
5 yrs
Mike RowlettDirector2018
8 yrs
Nancy KindelanDirector2021
5 yrs
Steve FurnaryDirector2023
3 yrs
Tom SimonDirector2023
3 yrs
Under 5 years5 to 6 years6 years or moreShow all 21 →

Officers and senior leadership

31 listediNamed in Part VII as officers, key employees or highest-compensated staff - not board members, shown for completeness.
NameTitle as filedOn the filings
Adam CotumaccioChief Impact & Philanthropy Officer2019
Angela LEKVP, Researchsince 2022
Anothony EnglertVP, Fundraising Operations2018
Brian BeirneVP of Multi-Channel Marketingsince 2021
Deborah BargeSVP, Chief Field Officer2020
Donald WoodPresident & CEO (Nov-Dec)since 2020
Eileen Timmins PHD Jan-SeptAsst. Sec. EVP Chief People Officer2018
Ellen VOSPresident & CEO (Jan-Oct)since 2018
Gail KernerSr VP & General Counsel2018
Grace PavlathSr VP Scientific Program Director2018
Henry LanmanSec. & Chief Legal Officersince 2022
Jeanne ZuckerSVP Healthcare Partnershipssince 2018
Jennifer AllebachSVP of Recreation and Camp Programssince 2019
Jonathon NagleChief Technology Officer2020
Joshua AckleyVP of Pr & Communicationssince 2020
Julie Faber CPAAsst. Treasurer & CFO (Jan)2018
Karen AlexanderEVP, Chief Impact & Philanthropy Officer2018
Karen AndrewsSecretary & Chief Legal Officersince 2019
Kathy KauffmannChief Strategy Development Officersince 2019
Kathy Kauffmann Jan-AUGChief Strategy Development2021
Kristin StephensonSVP, Chief Policy & Comm Engagement Officersince 2018
Kristine WelkerChief of Staffsince 2021
Lindsay KassofSec. & Assoc Legal Counselsince 2020
Meredith WilsonVP, Healthcare Communications & Education2019
Michael BrunoChief People and Administrative Officer2019
Michael KennedyTreasurer & CFOsince 2019
Michael Kennedy MAR-DECAsst. Treasurer, Asst. Sec. & CFO2018
Monica PappasVP, Technologysince 2022
Nora CapocciVP, Healthcare Services2023
Peripedes GondimVP, Human Resources & Volunteers2023
Sharon HesterleeChief Research Officersince 2020

Pay and hours

year to 31 December 2025iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.
NameTitle as filedHours a weekPay from the organisationRelated organisationsOther
Donald WoodOutgoing President & CEO50$662k$17k
Sharon HesterleePresident & CEO50$422k$71k
Henry LanmanCOO & Chief Legal Officer50$380k$56k
Ruth DaileyChief Development Officer50$304k$30k
Mary RothChief Marketing Officer50$259k$55k
Peripedes GondimOutgoing EVP, HR & Volunteers50$236k$15k
Nora CapocciEVP, Healthcare Services50$228k$24k
Angela LekChief Research Officer50$222k$14k
Jon van CottInterim CFO & Controller50$213k$48k
Michael KennedyOutgoing Treasurer & CFO50$158k$12k
Anjan AralihalliDirector1$0
Barry Byrne MD PhDDirector1$0
Benjamin Cumbo IIIDirector1$0
Charles D Schoor EsqDirector1$0
Christopher RosaVice Chairman5$0
Dan FriesDirector1$0
Elizabeth McNally MD PhDDirector1$0
Governor Brad HenryChairman5$0
Hon Robert E PipiaDirector1$0
John CostantinoDirector1$0
John E HowellDirector1$0
Lilian Wu PhDDirector1$0
Louis Kunkel PhDDirector1$0
Mark SmithDirector1$0
Matt PlummerDirector1$0
Mike RowlettOutgoing Director1$0
Nancy KindelanDirector1$0
Steve FurnaryDirector1$0
Tom SimonDirector1$0

Colorado roster

23 listediOfficers, directors and trustees from the latest filing with the Colorado Secretary of State (document 20263026858). Titles are as filed; some entries are registered agents or custodians of records rather than board members. Source: data.colorado.gov, public domain.
NameTitle as filed
Dan FriesDirector
Elizabeth McNallyDirector
Christopher RosaVice Chairman
Charles D. SchoorDirector
Robert E. PipiaDirector
Matt PlummerDirector
Benjamin Cumbo IIIDirector
John CostantinoDirector
Louis Kunkel, PhDDirector
Tom SimonDirector
Barry Byrne MD,Ph.D.Director
Kournetas PamelaCFO
Sharon HesterleePresident
Sharon HesterleePresident/CEO
John HowellDirector
Nancy KindelanDirector
Kournetas Pamela
Governor Brad HenryChairman
Steve FurnayDirector
Lilian Wu, PhDDirector
Mark SmithDirector
Henry LanmanSecretary
Anjan AralihalliDirector

About

Legal name
Muscular Dystrophy Association
EIN
131665552
Address
1016 W Jackson Blvd 1073, Chicago, IL, 60607-2914
State
Illinois
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... (as filed on the Form 990)
Activity (NTEE)
G50 Voluntary health associations and medical disciplines
IRS classification
501(c)03 (tax-exempt under section 501(c)(3) where shown)
Classified purpose
Voluntary Health Associations & Medical Disciplines
Size band
9 (IRS master file code)
Formed
1950
Principal officer
Sharon Hesterlee PhD (as named on the Form 990)
IRS ruling date
1 July 1952
Status
Code 01 (unconditional exemption)
Form 990 filings on record
6, latest 2023
IRS Publication 78
PC (contributions deductible)

Most connected

Longest observed on the filings

≥8years on the filingsGovernor Brad Henry
≥8years on the filingsBenjamin Cumbo III
≥8years on the filingsCharles D Schoor ESQ
≥8years on the filingsChristopher J Rosa PHD

Latest return

year to 31 December 2025iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2025. US dollars, as filed.
Total assets
$50.9m
Total liabilities
$41.2m
Net assets or fund balances
$9.7m
Contributions and grants received
$54.4m
Program service revenue
$0
Grants and similar paid out
$14.1m
Employees
272
Volunteers
934

Grants paid

25+ listediFrom Schedule I of the Form 990: grants and assistance to organisations in the United States, largest first (up to 25). Schedule I is filed only by organisations that gave more than $5,000 to any one recipient.
RecipientPurposeAmount
University of Washington Medical CenterMedical diagnosis$642k
Johns Hopkins University- CgMedical diagnosis and research$579k
The Regents of the University of California Los AngelesMedical diagnosis research and movr registry support$411k
University of Rochester -$399k
Massachusetts General HospitalMedical diagnosis and research$378k
Regents of the University of Minnesota - Twin Cities$273k
Children's Research Institute (CNMC)$259k
The Trustees of Columbia University in the City of New York$250k
University of Kansas Medical Center Research Institute IncMedical diagnosis and movr registry support$207k
Columbia University Medical Center$196k
University of Florida$192k
The Board of Trustees of the University of Illinois - Univ of Illinois at$190k
The Research Foundation for the State University of New York$189k
The Regents of the University of California (University of California Davis$189k
Emory University$160k
Miller School of Medicine of the University of Miami$158k
Boston Children's HospitalMedical diagnosis and research$145k
The University of Iowa$144k
The Regents of the University of California San FranciscoMedical diagnosis research and movr registry support$134k
Baylor College of MedicineMedical diagnosis and research$132k
University of MiamiMedical diagnosis and movr registry support$128k
Vanderbilt University Medical CenterMedical diagnosis and movr registry support$126k
Washington University in St LouisMedical diagnosis$125k
Virginia Commonwealth University$123k
Friedreich's Ataxia Research Alliance$113k