EIN 13-1665552

Muscular Dystrophy Association

IRS 501(c) type
501(c)(3)
Num. employees
231
Year formed
1950
Most recent tax filings
2022-12-01
Description
MDA funds research for muscular dystrophy, ALS and related neuromuscular diseases, while providing resources and education to patients and professionals.
Total revenues
$63,227,837
2022
Total expenses
$58,970,307
2022
Total assets
$64,403,820
2022
Num. employees
231
2022

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. 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. 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. 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
University of Miami (UM)Research$456,085
University of RochesterResearch$378,997
Johns Hopkins University (JHU)Research$331,243
...and 140 more grants made totalling $8,466,619

Who funds Muscular Dystrophy Association

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Dutch Bros FoundationDistribution of Funds for "drink One for Dane" Fundraiser$2,316,384
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$407,919
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$407,919
...and 242 more grants received totalling $6,900,602

Personnel at Muscular Dystrophy Association

NameTitleCompensation
Donald WoodPresident and Chief Executive Officer$522,923
Michael J KennedyChief Financial Officer$331,534
Kristine WelkerChief of Staff$304,472
Kathy Kauffmann Jan-AugChief Strategy Development$216,777
Henry LanmanSecretary and Chief Legal Officer$188,632
...and 16 more key personnel

Financials for Muscular Dystrophy Association

RevenuesFYE 12/2022
Total grants, contributions, etc.$59,144,929
Program services$0
Investment income and dividends$1,103,942
Tax-exempt bond proceeds$0
Royalty revenue$541,532
Net rental income$39,000
Net gain from sale of non-inventory assets$2,141,050
Net income from fundraising events$-642,517
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$899,901
Total revenues$63,227,837

Form 990s for Muscular Dystrophy Association

Fiscal year endingDate received by IRSFormPDF link
2022-122023-05-25990View PDF
2021-122022-08-02990View PDF
2020-122021-10-25990View PDF
2019-122021-02-17990View PDF
2018-122019-10-25990View PDF
...and 9 more Form 990s

Organizations like Muscular Dystrophy Association

OrganizationLocationRevenue
National Multiple Sclerosis SocietyNew York, NY$171,945,464
Epilepsy FoundationBowie, MD$21,897,167
ALS Association (ALS)Arlington, VA$55,567,608
Arthritis FoundationAtlanta, GA$59,471,904
Parkinsons Disease Foundation Incorporated (PDF)New York, NY$48,333,484
Autism SpeaksWashington, DC$36,262,685
Lupus Foundation of AmericaWashington, DC$17,263,965
Lupus Research Alliance (ALR)New York, NY$22,699,491
Susan G KomenDallas, TX$107,597,705
Cystic Fibrosis FoundationBethesda, MD$248,630,352
Data update history
May 18, 2024
Received grants
Identified 6 new grant, including a grant for $30,621 from International Association of Fire Fighters
February 3, 2024
Received grants
Identified 53 new grant, including a grant for $166,504 from United Phoenix Fire Fighters Association
October 26, 2023
Received grants
Identified 18 new grant, including a grant for $245,000 from Jordan Hays Foundation
August 21, 2023
Posted financials
Added Form 990 for fiscal year 2021
August 19, 2023
Received grants
Identified 137 new grant, including a grant for $2,316,384 from Dutch Bros Foundation
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 donations
General information
Address
161 N Clark St 3550
Chicago, IL 60601
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
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