Muscular Dystrophy Association HQ
Muscular Dystrophy Association
EIN: 13-1665552
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. 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.
Notes from the nonprofit
The mission of MDA since its inception 73 years ago has been to empower the people we serve to live longer, more independent lives. That mission has been a constant source of hope for more than a million people and their families during our seven decades. At MDA, families are at the heart of our mission, and the strength of the MDA community is resolute. To celebrate and recognize the power of our mission, we designated the year 2022 as the Year of Independence. Steadily, relentlessly, and successfully, the MDA has delivered more and more on the hopes and dreams of those we serve. But one thing has never changed – and never will – that is our commitment to the promise of research and emerging therapies to treat – and one day, cure – neuromuscular disorders that are genetic in nature.
Ruling year
1952
President and CEO
Donald S. Wood PhD
Main address
1016 W Jackson Blvd #1073 Suite 3550
Chicago, IL 60607 USA
EIN
13-1665552
Diseases and conditions
Neurology
Medical support services
Population served
People with physical disabilities
Adults
Children and youth
NTEE code
Specifically Named Diseases Research (H80)
Neurology, Neuroscience (G96)
Health Support Services (E60)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Tax forms
Communication
Programs and results
Reports and documents
Download annual reportsWhat we aim to solve
MDA is committed to transforming the lives of people affected by muscular dystrophy, ALS and related neuromuscular diseases.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Care Centers
At MDA, we are committed to ensuring that the MDA Care Center network operates with a multidisciplinary approach which brings together the expertise of professionals from a wide range of disciplines in one location to provide coordinated, patient-centered care. Each Care Center offers a team of physicians, nurses, and other healthcare professionals with unique expertise in meeting the ever-changing needs our community. This is considered the gold standard model of care for individuals with complex medical needs. What is equally important is that MDA’s nationwide clinic network of NMD specialists are connected to the latest clinical trials and FDA approved treatments and also provide critical access to genetic therapies and diagnostic testing while serving more than 70,000 people living with neuromuscular diseases annually.
Research
MDA has enabled the full spectrum of early scientific discoveries to uncover mechanisms of disease and identifying as well as testing therapeutic targets. We also fund vital infrastructure to expedite clinical trials and provide support for clinical network collaborations taking place all across the United States. Recognizing that promising research occurs worldwide, MDA funded a record number of international grants supporting research projects and early career fellowships, as we grow our reach beyond the United States. In 2022, MDA Venture Philanthropy (MVP) invested in the future by awarding $1.2 million to two promising start-up companies focused on developing novel therapies for neuromuscular disease. Myosana Therapeutics is developing non-viral gene therapy for muscle diseases, starting with Duchenne muscular dystrophy, while Pathmaker Neurosystems is developing a non-invasive neuromodulation device for amyotrophic lateral sclerosis.
MDA Summer Camp
Summer Camp is a magical place where anything is possible — from swimming to zip-lining, to sports and games, to dancing under a disco ball, all while gaining valuable life skills. MDA strives for every camp session to provide a true camp experience, which includes connecting with the outdoors, developing life skills, building lifelong friendships, and providing opportunities to try new things. When kids attend MDA Summer Camp they gain independence as they spend time away from home, learn to accept personal care from someone other than their parents, develop greater self-esteem and confidence, and spend time with other kids who understand what it’s like to live with a neuromuscular
disease.
MDA also provides a virtual option for Summer Camp – an online program that brings the magic of camp to
campers virtually. The program features daily Cabin Chat video calls, supply boxes sent to all participants, daily theme inspired camp activities with arts and crafts, STEM activities and more
MDA MOVR Data Hub
The first data hub that aggregates clinical, genetic and patient-reported data for multiple NMDs to improve health outcomes and accelerate drug development. MOVR efficiently captures clinical data from visits already happening with a unique level of stability and scalability. These attributes are accomplished by combining the MDA Care Center infrastructure with strong existing relationships with principal investigators and staff, while expanding the number of active MOVR sites and the number of indications provided.
Benefits for the whole community
• Researchers can better understand the relationship between health outcomes and genes, and between health outcomes and medical interventions (such as drugs, surgeries, and medical devices).
• Clinicians can quickly match their patients to clinical trials, approved therapies, and personalized care.
• Individuals at all ages and stages of neuromuscular disease gain a platform to be "seen and counted" by the medical and scientific communities
Public Policy & Advocacy
MDA’s Advocacy team was relentless in ensuring key decision makers passed laws and policies that benefited people with neuromuscular diseases (NMDs). MDA successfully led a large coalition of organizations in a joint campaign to increase access to and expand newborn screening programs. Thanks to these efforts, Congress invested an additional $3 million for lifesaving newborn screening programs at the Centers for Disease Control (CDC) and Prevention and $2 million at the Health Resources and Services Administration. In addition, lawmakers funded $1 million for a study to improve and modernize the national newborn screening program. Finally, MDA co-sponsored the nomination for Duchenne muscular dystrophy (DMD) to be added to the Recommended Uniform Screening Panel (RUSP) for newborn screening. MDA advocated for $450 million per year for the next three years for the Money Follows the Person program, which will make it easier for people to access Home and Community Based Services.
Where we work
Awards
Sonia Skarlatos Public Service Award 2019
American Society of Gene and Cell Therapy
Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Evaluation documents
Download evaluation reportsTotal # individuals served annually within the MDA Care Center Network
This metric is no longer tracked.Totals By Year
Related Program
Care Centers
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Provide critical access to genetic therapies and diagnostic testing for people living with neuromuscular diseases annually
The number of New MDA Client Members per year
This metric is no longer tracked.Totals By Year
Related Program
Care Centers
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Provided support and/or resources and depending, they participated in an event and/or program at MDA (ie. camp, walk, community education, etc.) Clients = those with a confirmed NMD diagnosis
The # of Community Education programs offered
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
These programs support every individual and family living with a neuromuscular disease through the delivery of relevant, responsive, & actionable content. Such as navigating critical life transitions
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Our leadership in genetic medicine and neuromuscular disease treatment development will grow and that will bring new hope and possibilities to everyone living with muscular dystrophy, spinal muscular atrophy, ALS, and dozens of other neuromuscular diseases to live longer, more independent lives.
What are the organization's key strategies for making this happen?
We fulfill our mission through Innovations in Science and Innovations in Care.
Innovations in science:
MDA is the largest source of funding for neuromuscular disease research outside the federal government and has invested more than $1 billion since its inception. Research supported by MDA is directly linked to life-changing therapies across multiple neuromuscular diseases
MDA's Neuromuscular Observational Research Data Hub (MOVR) is the first and only data hub that aggregates clinical, genetic and patient reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development.
Innovations in care:
We support the largest network of multidisciplinary clinics, providing best-in-class care at more than 150 of the nation’s top medical institutions. Our Resource Hub serves the community with one-on-one specialized support and we offer educational conferences, events, and materials for families and healthcare providers. Each year thousands of children and young adults learn vital life skills and gain independence at summer camp and through recreational programs, at no cost to families
What are the organization's capabilities for doing this?
MDA’s National Care Center Network…
• Is the largest network of neuromuscular clinics, providing best-in-class care at 150+ of the nation’s top medical institutions across the U.S.
• Provides expert care for individuals who are living with muscular dystrophy, ALS and related neuromuscular diseases
• Provides longitudinal provider entered clinical insights for the Neuromuscular Observational Research Data Hub (MOVR), which aggregates clinical, genetic, and patient reported data for multiple neuromuscular diseases to improve health outcomes and accelerate therapy development
MDA’s National Resource Center…
• Serves the neuromuscular community with one-on-one specialized support
• Provides educational resources and materials to help navigate living with neuromuscular disease.
MDA’s Policy & Advocacy Program…
Advocates Return to DC. After a three-year hiatus, advocates went back to Capitol Hill, but this time virtually during the MDA Virtual Summit & Hill Day. On September 28 and 29, families from across the country raised their voices and urged lawmakers to improve air travel, increase access to genetic counselors, and pass Food and Drug Administration (FDA) and clinical trial reforms. Together, MDA had 100 meetings with elected officials and now look to build on this momentum in 2023.
MDA Summer Camp and Recreational Programs
• Each year thousands of children and teens attend MDA Summer Camp, where they have the opportunity to exercise independence, connect with peers and learn valuable life skills.
What have they accomplished so far and what's next?
MDA's National Care Center Network...
• Is the largest network of neuromuscular clinics, providing best-in-class care at 150+ of the nation’s top medical institutions across the U.S.
MDA Summer Camp and Recreational Programs
• In a 2022 post-camp survey capturing the impressions of 700+ camper parents, 98% of campers said MDA Summer Camp provides chances to make new friends or get closer with an old friend. 88% of respondents said MDA Summer Camp helps to develop a positive self-identity
Community Education
• These programs support every individual and family living with a neuromuscular disease through the delivery of relevant, responsive, and actionable content. These programs focus on navigating critical life transitions, increasing disease understanding, and supporting access to independence. MDA partners with medical thought leaders at MDA Care Centers, social workers, allied health professionals, community resource leaders, and other experts to develop programming that provides accurate and up-to-date information.
2022 Community Education Programs:
• MDA Engage Seminars and Symposia Live and on-demand virtual programs focus on providing in-depth information about a specific disease or topic relevant to the neuromuscular disease community.
• Community Education Materials Print-ready materials include disease fact sheets, at-home physical therapy guides, emergency room alert cards, and more. Many of these materials are also available in Spanish.
• ONEvoice Community Insights Structured opportunities for MDA to hear and learn from the neuromuscular disease community through surveys and family roundtables.
•Access Workshops On-demand learning focused on increasing health literacy, empowerment, and self-advocacy to overcome barriers to education, employment, insurance, equipment and more.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
-
How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We ask the people who gave us feedback how well they think we responded
-
What challenges does the organization face when collecting feedback?
It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection
Financials
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2023 info
1.02
Months of cash in 2023 info
1.8
Fringe rate in 2023 info
31%
Funding sources info
Assets & liabilities info
Financial data
Muscular Dystrophy Association
Balance sheetFiscal Year: Jan 01 - Dec 31
The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.
Fiscal Year: Jan 01 - Dec 31
This snapshot of Muscular Dystrophy Association’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.
Created in partnership with
Business model indicators
| Profitability info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Unrestricted surplus (deficit) before depreciation | -$10,661,161 | -$20,844,815 | $29,528,245 | $3,392,325 | $2,394,730 |
| As % of expenses | -9.5% | -30.8% | 56.3% | 5.9% | 3.9% |
| Unrestricted surplus (deficit) after depreciation | -$11,330,924 | -$21,590,453 | $28,537,803 | $2,248,975 | $1,364,322 |
| As % of expenses | -10.0% | -31.6% | 53.4% | 3.8% | 2.2% |
| Revenue composition info | |||||
|---|---|---|---|---|---|
| Total revenue (unrestricted & restricted) | $100,972,775 | $63,707,273 | $63,393,990 | $63,227,837 | $59,437,892 |
| Total revenue, % change over prior year | -8.8% | -36.9% | -0.5% | -0.3% | -6.0% |
| Program services revenue | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Membership dues | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Investment income | 1.5% | 1.5% | 1.4% | 1.7% | 2.4% |
| Government grants | 0.3% | 0.5% | 14.2% | 3.8% | 0.6% |
| All other grants and contributions | 96.9% | 76.3% | 79.4% | 88.7% | 92.0% |
| Other revenue | 1.3% | 21.6% | 5.0% | 5.7% | 5.0% |
| Expense composition info | |||||
|---|---|---|---|---|---|
| Total expenses before depreciation | $112,080,036 | $67,626,804 | $52,429,194 | $57,826,957 | $61,097,362 |
| Total expenses, % change over prior year | 4.2% | -39.7% | -22.5% | 10.3% | 5.7% |
| Personnel | 42.7% | 46.2% | 38.4% | 41.5% | 42.7% |
| Professional fees | 8.6% | 5.0% | 6.5% | 7.2% | 6.9% |
| Occupancy | 4.4% | 4.9% | 3.1% | 1.1% | 1.3% |
| Interest | 0.3% | 0.4% | 0.4% | 0.5% | 1.2% |
| Pass-through | 23.5% | 22.2% | 26.1% | 22.5% | 24.4% |
| All other expenses | 20.5% | 21.3% | 25.7% | 27.1% | 23.4% |
| Full cost components (estimated) info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Total expenses (after depreciation) | $112,749,799 | $68,372,442 | $53,419,636 | $58,970,307 | $62,127,770 |
| One month of savings | $9,340,003 | $5,635,567 | $4,369,100 | $4,818,913 | $5,091,447 |
| Debt principal payment | $0 | $0 | $2,500,000 | $2,530,933 | $0 |
| Fixed asset additions | $2,691,414 | $0 | $2,586,071 | $0 | $0 |
| Total full costs (estimated) | $124,781,216 | $74,008,009 | $62,874,807 | $66,320,153 | $67,219,217 |
Capital structure indicators
| Liquidity info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Months of cash | 1.0 | 1.4 | 2.7 | 2.1 | 1.8 |
| Months of cash and investments | 7.2 | 10.9 | 15.2 | 11.5 | 11.6 |
| Months of estimated liquid unrestricted net assets | -0.6 | -4.9 | 0.2 | 0.7 | 0.9 |
| Balance sheet composition info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Cash | $9,048,380 | $7,888,385 | $11,632,247 | $10,082,964 | $9,122,871 |
| Investments | $58,344,302 | $53,276,935 | $54,607,036 | $45,126,857 | $50,072,699 |
| Receivables | $5,999,917 | $4,426,491 | $3,621,220 | $3,820,381 | $4,099,385 |
| Gross land, buildings, equipment (LBE) | $9,640,680 | $4,321,022 | $6,781,878 | $7,263,393 | $5,288,518 |
| Accumulated depreciation (as a % of LBE) | 72.3% | 56.0% | 48.5% | 61.0% | 73.8% |
| Liabilities (as a % of assets) | 100.9% | 133.0% | 93.8% | 89.4% | 87.4% |
| Unrestricted net assets | -$5,966,906 | -$27,557,359 | $980,444 | $3,229,419 | $4,593,741 |
| Temporarily restricted net assets | N/A | N/A | N/A | N/A | N/A |
| Permanently restricted net assets | N/A | N/A | N/A | N/A | N/A |
| Total restricted net assets | $5,253,255 | $3,847,698 | $3,741,306 | $3,579,245 | $3,800,095 |
| Total net assets | -$713,651 | -$23,709,661 | $4,721,750 | $6,808,664 | $8,393,836 |
Key data checks
| Key data checks info | 2019 | 2020 | 2021 | 2022 | 2023 |
|---|---|---|---|---|---|
| Material data errors | No | No | No | No | No |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
President and CEO
Donald S. Wood PhD
Donald S. Wood, PhD is returning to his “roots” at the Muscular Dystrophy Association to become its President and CEO. He will launch the next chapter of scientific discoveries and innovative medical services to continue to transform the lives of people with muscular dystrophy, ALS and related neuromuscular diseases.
Involved with the MDA for nearly 40 years, Dr. Wood previously was Vice Chairman of the Board for the MDA. Wood most notably launched and managed the organization’s Task Force on Genetics that led to the discovery of the genetic cause of muscular dystrophy in 1986.
Dr. Wood has more than four decades of experience leading both nonprofit and for-profit institutions. Throughout the 1990s and early 2000s, he served first as an executive and then as President and Chief Operating Officer of IntegraMedAmerica, Inc., a medical services provider. Most recently, Dr. Wood served as Vice President of Institutional Effectiveness at Odessa Community College.
Number of employees
Source: IRS Form 990
Muscular Dystrophy Association
Officers, directors, trustees, and key employeesSOURCE: IRS Form 990
Compensation data
Muscular Dystrophy Association
Highest paid employeesSOURCE: IRS Form 990
Compensation data
Muscular Dystrophy Association
Board of directorsas of 08/27/2024
Board of directors data
Governor Brad Henry
Charley Schoor, Esq.
Ben Cumbo
Louis Kunkel,PhD
Mark Smith
Lilian Wu, PhD
Anjan Aralihalli
John Costantino
Ankur Ghia
Jennifer Gottlieb
Elizabeth McNally, MD, PhD
Hon. Robert E. Pipia
Eugene Williams
Dan Fries
John Howell
Nancy Kindelan
Matt Plummer
Chris Rosa
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
No data
Gender identity
No data
Transgender Identity
No data
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 08/27/2024GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We ask team members to identify racial disparities in their programs and / or portfolios.
- We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We have community representation at the board level, either on the board itself or through a community advisory board.
- We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
- We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.
Contractors
Fiscal year endingProfessional fundraisers
Fiscal year endingSOURCE: IRS Form 990 Schedule G
Solicitation activities
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