Muscular Dystrophy Association

What Muscular Dystrophy Association does

The Muscular Dystrophy Association (MDA), founded in 1950 and headquartered in Chicago (incorporated in New York), is a 501(c)(3) nonprofit voluntary health organization serving individuals living with muscular dystrophy, ALS, and over 300 related neuromuscular conditions. MDA delivers a multi-program portfolio that includes a national network of over 150 MDA Care Centers at leading U.S. healthcare institutions, the MOVR (Neuromuscular Observational Research) Data Hub that aggregates clinical and patient-reported outcomes across those centers, the annual MDA Clinical & Scientific Conference, MDA Engage Symposia, virtual learning programs, summer camps, family getaways, a Gene Therapy Support Network, a Mentorship Program, a College Scholarship Program, and a Durable Medical Equipment Grant Program. Patient support is delivered through a central Resource Center (1-833-ASK-MDA1), community support groups, peer connections, and the Quest Media publication (magazine, newsletter, blog, podcast).

MDA's underlying technology stack is anchored by the proprietary MOVR Data Hub, which consolidates clinical, genetic, and patient-reported data from the Care Center network to support neuromuscular disease research and therapeutic development. The organization funds research through MDA Venture Philanthropy (biotech investments), MDA Kickstart (early-stage research), traditional research grants, and named collaborative funds (e.g., the Helen Paves Fund for ALS, Myositis Association/MDA Yale IBM grant). MDA-supported research is credited as foundational to multiple FDA-approved therapies, including SPINRAZA for spinal muscular atrophy (via Cold Spring Harbor Laboratory work by Dr. Adrian Krainer), KYGEVVI for thymidine kinase 2 deficiency, Novartis' Itvisma gene therapy for SMA, and VYVGART label expansions for myasthenia gravis.

MDA is funded entirely through charitable giving and does not charge patients or families for any service. Revenue streams include individual donations (one-time, monthly, tribute, planned giving), corporate partnerships and sponsorships (flagship partners: Acosta Group, CITGO, Dutch Bros, Biogen, Sarepta, Edgewise, Tanabe, Amgen, Argenx, Alexion), special events (MDA Muscle Walk, Fill the Boot with the International Association of Fire Fighters, corporate golf classics), the MDA Store, and venture philanthropy returns. The organization is governed by a board of directors under President and CEO Sharon Hesterlee, PhD (appointed November 2025, succeeding Donald S. Wood, PhD), with executive leadership including a Chief Development Officer, Chief Marketing Officer, CFO/COO, and EVP & Chief Medical and Scientific Officer.

Name

Muscular Dystrophy Association

Legal name

Muscular Dystrophy Association, Inc.

Website

https://mda.org

Company type

Private

Founded year

1950

Operating status

Operating

Headcount range

1,001–5,000 employees

Ownership category

akta.pro rank

Product category

Neuromuscular Disease Patient Advocacy and Research Services

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Health Services (8000)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Healthcare Master Data Management (MDM) & Patient/Provider Identity Data (HLACAIAB)

Keywords

• Neuromuscular disease research
• Patient advocacy services
• Rare disease funding
• Clinical care networks
• Nonprofit health organization

Headquarters

HQ city

Chicago

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Individual Donations: MDA receives contributions from individual donors through its online giving portal, monthly giving programs, tribute gifts, and planned giving. The organization has a donor privacy policy and offers various giving options including one-time and recurring donations.
2. Corporate Partnerships and Sponsorships: MDA partners with corporations such as Acosta Group (40-year partnership, $102 million raised), CITGO ($4.36 million raised in 2025), Dutch Bros, and others. Corporate sponsors support research, care, and awareness programs through fundraising campaigns and grants.
3. Special Events: MDA organizes fundraising events including MDA Muscle Walk, Fill the Boot (firefighter partnerships), corporate golf classics, and annual giving campaigns like the Dutch Bros Drink One for Dane Day.
4. MDA Store and Merchandise: The MDA Store sells merchandise with proceeds supporting MDA programs and services.
5. MDA Venture Philanthropy: MDA invests in biotech companies and research through its venture philanthropy program to advance therapeutic development for neuromuscular diseases.

Go-to-market motion1 record

Distribution channels5 records

Marketing channels9 records

Core offering

The Muscular Dystrophy Association (MDA) is a 501(c)(3) voluntary health organization that funds research, delivers clinical care through a national network of Care Centers, and provides direct support services (education, advocacy, equipment grants, summer camp, scholarships) to individuals and families affected by muscular dystrophy, ALS, and over 300 neuromuscular diseases. MDA generates revenue through individual donations, corporate partnerships, special events, the MDA Store, and a venture philanthropy program that invests in therapeutic development.

Product overview

The Muscular Dystrophy Association (MDA) operates as a nonprofit health organization rather than a technology product company. MDA provides a comprehensive portfolio of patient-facing programs and services including Quest Magazine and Quest Podcast (media/publication offerings), MDA Care Centers (clinical care network), the MOVR Data Hub (research data platform), and various support programs such as the Resource Center, Summer Camp, Gene Therapy Support Network, and Mentorship Program. The organization also offers educational initiatives through MDA Engage Symposia and Virtual Learning Programs, financial assistance through the Durable Medical Equipment Grant Program and College Scholarship Program, and advocacy services. These programs collectively support individuals and families affected by over 300 neuromuscular diseases including muscular dystrophy, ALS, and related conditions.

Differentiator

Problem solved

Functional benefit

Brands

• Quest Media: MDA's magazine, podcast, blog, and newsletter platform providing educational content and community resources for the neuromuscular disease community.
• MDA Resource Center
• MDA Care Centers
• MDA Summer Camp
• MOVR Data Hub
• MDA Let's Play

Products and services

• MDA Care Center Network A nationwide network of multidisciplinary care centers providing diagnostic, treatment, and follow-up clinical services to individuals living with muscular dystrophy, ALS, and related neuromuscular diseases.

Quantifiable outcome

• Over $102 million raised through Acosta Group partnership over 40 years
• +3 more outcomes

Named customers1 record

Segments5 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

15 partnerships are on record, tiered core, flagship and minor.

• Dutch BroscoreStrategic or Co-development Partner · 11 May 2026Dutch Bros holds its annual Drink One for Dane Day of Giving on May 15, 2026, donating $1 per drink sold to MDA to support ALS awareness and research in memory of co-founder Dane Boersma. The campaign is approaching $20 million raised cumulatively since inception.
• Acosta GroupflagshipStrategic or Co-development Partner · 17 December 2025Acosta Group and MDA commemorate 40 years of partnership, having raised over $102 million to support individuals affected by neuromuscular diseases. The collaboration began with the 'Aisles of Smiles' campaign in 1985 and focuses on enhancing awareness and providing resources for those with these conditions.
• The Myositis AssociationcoreStrategic or Co-development Partner · 3 December 2025The Myositis Association and MDA announced a partnership to fund Yale University research on immune dysfunction in inclusion body myositis (IBM). The research grant of $299,992 supports Dr. Roy's study using single-cell analysis to identify new therapeutic targets over three years.
• Ken Paves / Helen Paves Fund for ALScoreStrategic or Co-development Partner · 1 December 2025Beauty expert Ken Paves partnered with MDA to launch The Helen Paves Fund for Care and a Cure, aimed at supporting ALS research and care in memory of his mother Helen Paves who died from ALS. The fund will support MDA's ALS care centers nationwide.
• CITGOcoreStrategic or Co-development Partner · 23 October 2025CITGO raised a record $4.36 million in 2025 for MDA through various fundraising events in its operational footprint, making it the most successful year in its partnership history. Funds support research, care, and advocacy for neuromuscular diseases.
• International Association of Fire Fighters (IAFF)coreStrategic or Co-development PartnerMDA's long-standing partnership with fire fighters through the Fill the Boot campaign and other fundraising initiatives. Fire fighters across the country raise funds and awareness for MDA.
• Media Partners (ALS News Today, Muscular Dystrophy News, Friedreich's Ataxia News, etc.)coreGTM or Marketing PartnerMDA has media partnerships with disease-specific news outlets including ALS News Today, Muscular Dystrophy News, Friedreich's Ataxia News, Pompe Disease News, SMA News Today, Charcot-Marie-Tooth News, Lambert-Eaton News, Myasthenia Gravis News, CGTLive, NeurologyLive, and Rare Disease Advisor to build community and support neuromuscular disease research.
• BiogencoreStrategic or Co-development PartnerBiogen is a key pharmaceutical partner supporting MDA programs and research. MDA supported research that contributed to the development of SPINRAZA for spinal muscular atrophy, and Biogen sponsors MDA Engage educational events and webinars.
• Edgewise TherapeuticscoreStrategic or Co-development PartnerEdgewise Therapeutics presents sevasemten data for Becker muscular dystrophy at MDA conferences and sponsors MDA virtual learning programs. Sevasemten has received FDA Orphan Drug Designation and Fast Track designations for BMD and DMD.
• Tanabe Pharma AmericacoreStrategic or Co-development PartnerTanabe Pharma America presents research on RADICAVA ORS (edaravone) for ALS at MDA conferences and sponsors MDA virtual learning programs. RADICAVA ORS received FDA approval on May 12, 2022.
• AmgenminorStrategic or Co-development PartnerAmgen sponsors MDA webinars including Mental Wellness and Self Care, Daily Living webinars, and cardiac care educational programs.
• Sarepta TherapeuticscoreStrategic or Co-development PartnerSarepta presents clinical data on gene therapy and exon-skipping programs for DMD at MDA conferences and sponsors MDA learning series on LGMD and other topics.
• ArgenxminorStrategic or Co-development PartnerArgenx supports MDA programs and education on myasthenia gravis, with VYVGART receiving FDA label expansion for generalized myasthenia gravis treatment.
• AlexionminorStrategic or Co-development PartnerAlexion supports MDA educational programs on generalized myasthenia gravis with research presentations on PREVAIL Phase 3 study.
• Cyprus Muscular Dystrophy AssociationminorOthersMDA works with international muscular dystrophy associations including Cyprus Muscular Dystrophy Association, which benefits from charity trips and fundraising support.

Scale indicators11 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• ALS Association: The leading U.S. voluntary health organization focused specifically on ALS — one of MDA's core disease focus areas. Directly comparable nonprofit health model: research funding, certified care centers, advocacy, and community fundraising.
• Parent Project Muscular Dystrophy: Disease-specific nonprofit focused on Duchenne muscular dystrophy, a core MDA disease area. Directly comparable in mission, research-grant deployment, and patient advocacy; competes for the same donor and biotech-partner dollars in the DMD space.
• Cure SMA: Disease-specific nonprofit focused on spinal muscular atrophy — a core MDA disease. Closely comparable operating model (research funding, family support, advocacy) and one of the more capitalized single-disease neuromuscular nonprofits, often partnering with MDA on shared interests.
• Charcot-Marie-Tooth Association: Disease-specific patient advocacy and research nonprofit for CMT, one of the neuromuscular conditions covered by MDA. Comparable model of patient registry (CMTA has its own genetic data initiatives), research grants, and clinical-care-network advocacy.
• Friedreich's Ataxia Research Alliance (FARA): Research and patient-advocacy nonprofit for Friedreich's ataxia, a neuromuscular condition within MDA's portfolio. Comparable model combining research grants, patient registry infrastructure, and clinical-trial-readiness programs.
• Myasthenia Gravis Foundation of America: Patient-advocacy and research nonprofit for myasthenia gravis, a neuromuscular disease covered by MDA. Directly comparable in patient-support services, professional education, and research funding, with overlapping pharma partners (argenx, Alexion).
• The Myositis Association: Disease-specific nonprofit for myositis (including inclusion body myositis), a key MDA-covered condition. Active research-grant partner with MDA (joint $299,992 Yale grant); closely comparable in mission, patient community focus, and research-funding activities.

Broad incumbents

• March of Dimes: Large, established U.S. voluntary health nonprofit operating across maternal/infant health. Comparable as a broad-incumbent health nonprofit with similar fundraising infrastructure (corporate partnerships, individual giving, special events), but operates in a different disease vertical.
• National Organization for Rare Disorders (NORD): Umbrella advocacy and research organization for the broader U.S. rare-disease community. Comparable as an advocacy-driven nonprofit serving overlapping patient populations (many neuromuscular conditions are rare diseases), and a frequent policy partner with MDA.

Regional players

• Muscular Dystrophy UK: U.K.-based neuromuscular disease nonprofit with mission, programs, and brand positioning directly analogous to MDA. Operates as MDA's primary regional counterpart outside the U.S., offering comparative insight on cross-border fundraising and care models.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/MDAnews
• YouTubeyoutube.com/mda
• Facebookfacebook.com/MDANational
• LinkedInlinkedin.com/company/muscular-dystrophy-association
• Instagraminstagram.com/mdaorg
• TikToktiktok.com/@mdaorg

Revenue estimate

Valuation estimate

Number of profiles

Profiles14 records

Funding overview

Funding rounds1 record

Investors1 record

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M&A

Investments8 records

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Muscular Dystrophy Association