Muscular Dystrophy Association

Organization Overview

Muscular Dystrophy Association is located in Chicago, IL. The organization was established in 1952. According to its NTEE Classification (G50) the organization is classified as: Nerve, Muscle & Bone Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2021, Muscular Dystrophy Association employed 248 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Muscular Dystrophy Association is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2020, Muscular Dystrophy Association generated $63.7m in total revenue. This represents a relatively dramatic decline in revenue. Over the past 6 years, the organization has seen revenues fall by an average of (10.7%) each year. All expenses for the organization totaled $68.4m during the year ending 12/2020. As we would expect to see with falling revenues, expenses have declined by (9.1%) per year over the past 6 years. You can explore the organizations financials more deeply in the financial statements section below.

Since 2015, Muscular Dystrophy Association has awarded 1,490 individual grants totaling $122,570,451. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2020

Describe the Organization's Mission:

Part 3 - Line 1

THE MUSCULAR DYSTROPHY ASSOCIATION (MDA) IS COMMITTED TO TRANSFORMING THE LIVES OF PEOPLE WITH MUSCULAR DYSTROPHY, ALS, AND RELATED NEUROMUSCULAR DISEASES THROUGH INNOVATIONS IN SCIENCE AND INNOVATIONS IN CARE.

Describe the Organization's Program Activity:

Part 3 - Line 4a

HEALTH CARE AND COMMUNITY SERVICES:MDA IS COMMITTED TO TRANSFORMING THE LIVES OF PEOPLE AFFECTED BY MUSCULAR DYSTROPHY, ALS AND RELATED NEUROMUSCULAR DISEASES THROUGH INNOVATIONS IN SCIENCE AND INNOVATIONS IN CARE. 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.


RESEARCH: MDA IS THE LARGEST NON-GOVERNMENTAL FUNDER OF NEUROMUSCULAR DISEASE RESEARCH IN THE COUNTRY, SUPPORTING MORE THAN 40 NEUROMUSCULAR DISEASES INCLUDING MUSCULAR DYSTROPHY, ALS, AND MANY OTHERS. SINCE ITS INCEPTION IN 1950, MDA HAS INVESTED MORE THAN $1 BILLION IN NEUROMUSCULAR DISEASE RESEARCH TO UNCOVER NEW TREATMENTS AND CURE. A SINGLE BREAKTHROUGH CAN LEAD TO A CURE. OUR UMBRELLA MODEL OF 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.


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 U.S., 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, A FLAGSHIP EDUCATIONAL EVENT SERIES THAT BRINGS LOCAL HIGH-IMPACT EDUCATIONAL PROGRAMS TO THE NMD COMMUNITY. 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.


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Outside Vendors & Contractors

Vendor Name (Service)Compensation
Tyler Haines Cunningham
Marketing
$311,959
Erick James Soderstrom
Marketing
$208,000
Sibson Consulting
Pension Management
$172,900
Deb Barge
Consulting
$140,000
Ellen Shedlarz
Consulting
$120,961
View All Vendors

Financial Statements

Statement of Revenue
Total Revenue from Contributions, Gifts, Grants & Similar$51,830,703
Investment income $965,018
Tax Exempt Bond Proceeds $0
Royalties $77,828
Net Rental Income $0
Net Gain/Loss on Asset Sales $13,282,066
Net Income from Fundraising Events -$2,861,797
Net Income from Gaming Activities $2,950
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $63,707,273

Grants Awarded

Over the last fiscal year, Muscular Dystrophy Association has awarded $12,181,260 in support to 167 organizations.

Grant RecipientAmount

MASSACHUSETTS GENERAL HOSPITAL

Org PageRecipient Profile

Somerville, MA

PURPOSE: MEDICAL DIAGNOSIS AND RESEARCH

$589,835

UNIVERSITY OF MIAMI

Org PageRecipient Profile

Coral Gables, FL

PURPOSE: MEDICAL DIAGNOSIS RESEARCH AND REGISTRY SUPPORT

$550,986

JOHNS HOPKINS UNIVERSITY

Org PageRecipient Profile

Baltimore, MD

PURPOSE: MEDICAL DIAGNOSIS RESEARCH AND REGISTRY SUPPORT

$475,755

THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK

Org PageRecipient Profile

New York, NY

PURPOSE: MEDICAL DIAGNOSIS, RESEARCH AND REGISTRY SUPPORT

$323,293

CAROLINAS HEALTHCARE FOUNDATION

Org PageRecipient Profile

Charlotte, NC

PURPOSE: RESEARCH

$319,228

THE BOARD OF TRUSTEES OF THE UNIVERSITY OF ILLINOIS

Org PageRecipient Profile

Urbana, IL

PURPOSE: RESEARCH

$303,951
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 6 grants that Muscular Dystrophy Association has recieved totaling $18,351.

Awarding OrganizationAmount
Sullivan Family Foundation

Eden, NY

PURPOSE: CHARITABLE

$15,000
Leonard and Sandra Jacob Foundation

Wilmington, DE

PURPOSE: GENERAL & UNRESTRICTED

$1,001
Harvey And Leslie Wagner Foundation

Incline Village, NV

PURPOSE: GENERAL BUDGET

$1,000
Fred J Maloof Family Foundation

St Clair Shores, MI

PURPOSE: CHARITABLE DONATION

$1,000
Gerling Family Foundation Inc

Evansville, IN

PURPOSE: GENERAL OPERATING EXPENSE

$250
Gannett Foundations Inc

Mclean, VA

PURPOSE: CHARITABLE PURPOSE

$100
View Grant Recipient Profile

Endowment Analysis

Beg. Balance$684,320
Earnings$113,304
Admin Expense$96,308
Ending Balance$701,316

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