EIN 13-1665552

Muscular Dystrophy Association

IRS 501(c) type
501(c)(3)
Num. employees
242
Year formed
1950
Most recent tax filings
2023-12-01
Description
MDA funds research for muscular dystrophy, ALS and related neuromuscular diseases, while providing resources and education to patients and professionals.
Total revenues
$59,437,892
2023
Total expenses
$62,127,770
2023
Total assets
$66,561,388
2023
Num. employees
242
2023

Program areas at Muscular Dystrophy Association

Please see schedule o for further discussion of ppp loan forgiveness as it pertains to total contribution revenue.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 of the 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.
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.
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.

Grants made by Muscular Dystrophy Association

GranteeGrant descriptionAmount
Johns Hopkins University (JHU)Research$508,290
University of Kansas Medical Center Research InstituteResearch$505,832
University of Miami (UM)Research$457,145
...and 159 more grants made totalling $10,444,210

Who funds Muscular Dystrophy Association

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Dutch Bros FoundationDistribution of Funds for "drink One for Dane" Fundraiser$2,500,000
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$380,774
The Marshall Heritage FoundationDallas Uncork A Cure & Research Funding$335,000
...and 235 more grants received totalling $6,736,264

Personnel at Muscular Dystrophy Association

NameTitleCompensation
Donald WoodPresident and Chief Executive Officer$490,624
Michael J KennedyChief Financial Officer$334,979
Kristine WelkerChief of Staff$304,472
Kathy Kauffmann Jan-AugChief Strategy Development$216,777
Henry LanmanSecretary and Chief Legal Officer$357,404
...and 18 more key personnel

Financials for Muscular Dystrophy Association

RevenuesFYE 12/2023
Total grants, contributions, etc.$56,761,618
Program services$0
Investment income and dividends$1,443,870
Tax-exempt bond proceeds$0
Royalty revenue$1,141,007
Net rental income$45,000
Net gain from sale of non-inventory assets$792,506
Net income from fundraising events$-1,718,775
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$972,666
Total revenues$59,437,892

Form 990s for Muscular Dystrophy Association

Fiscal year endingDate received by IRSFormPDF link
2023-122024-05-01990View PDF
2022-122023-05-25990View PDF
2021-122022-08-02990View PDF
2020-122021-10-25990View PDF
2019-122021-02-17990View PDF
...and 10 more Form 990s

Organizations like Muscular Dystrophy Association

OrganizationLocationRevenue
National Multiple Sclerosis SocietyNew York, NY$149,451,246
Epilepsy FoundationBowie, MD$17,841,214
ALS Association (ALS)Arlington, VA$55,567,608
Parkinsons Disease Foundation Incorporated (PDF)New York, NY$48,333,484
Arthritis FoundationAtlanta, GA$59,471,904
Autism SpeaksWashington, DC$36,262,685
Susan G KomenDallas, TX$107,597,705
Cystic Fibrosis FoundationBethesda, MD$248,630,352
Lupus Foundation of AmericaWashington, DC$17,248,744
National Bleeding Disorders FoundationNew York, NY$18,150,168
Data update history
August 25, 2024
Received grants
Identified 49 new grant, including a grant for $2,500,000 from Dutch Bros Foundation
August 8, 2024
Updated personnel
Identified 4 new personnel
July 14, 2024
Used new vendors
Identified 3 new vendors, including , , and
July 13, 2024
Posted financials
Added Form 990 for fiscal year 2023
May 18, 2024
Received grants
Identified 6 new grant, including a grant for $30,621 from International Association of Fire Fighters
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyConducts researchLobbyingFundraising eventsPeer-to-peer fundraisingOperates internationallyNational levelReceives government fundingEndowed supportCommunity engagement / volunteeringTax deductible donationsAccepts online donations
General information
Address
1016 W Jackson Blvd 1073
Chicago, IL 60607
Metro area
Chicago-Naperville-Elgin, IL-IN-WI
County
Cook County, IL
Website URL
mda.org/ 
Phone
(312) 260-5900
Facebook page
MDANational 
Twitter profile
@mdanews 
IRS details
EIN
13-1665552
Fiscal year end
December
Taxreturn type
Form 990
Year formed
1950
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G50: Nerve, Muscle, and Bone Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
California AB-488 details
AB 488 status
May Operate or Solicit for Charitable Purposes
Charity Registration status
Current
FTB status revoked
Not revoked
AG Registration Number
000649
FTB Entity ID
0257721
AB 488 data last updated ("as-of") date
2024-11-06
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