Muscular Dystrophy Association

What it reported doing in 2025

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 ofthe 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.

Financial Efficiency

• Mission deployment rate: 72.7%; rating input score 73
• Program expense ratio: 70.9%; rating input score 71
• Fundraising efficiency: $3.68 raised per $1 spent on fundraising; rating input score 11; 11th percentile among comparable filings

Transparency & Controls

• Consistency checks: 94.7%; rating input score 95; 27th percentile among comparable filings
• Pay-setting controls: 4 of 6 controls in place; rating input score 67
  • Compensation committee: Pass
  • Independent consultant: Pass
  • Other Form 990s reviewed: Missing
  • Written employment contract: Missing
  • Compensation survey or study: Pass
  • Board or committee approval: Pass
• Foreign activity oversight: 3 of 8 controls in place; rating input score 38
  • Claims monitoring procedures: Pass
  • Requires narrative reports: Pass
  • Conducts field audits: Fail
  • May suspend future funding: Pass
  • Requires financial reports: Fail
  • Conducts site visits: Fail
  • Requires grant agreements: Fail
  • May require repayment: Fail
• Grant itemization coverage: 99.1%; rating input score 99; 41st percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
• Governance controls: 9 of 9 controls in place; rating input score 100
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: Pass
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: 3.8%; rating input score 53; 53rd percentile among comparable filings
• Total-asset coverage ratio: 0.82; rating input score 24; 24th percentile among comparable filings
• Liabilities to assets ratio: 0.81; rating input score 16; 16th percentile among comparable filings
• Officer compensation ratio: 5.6%; rating input score 15; 15th percentile among comparable filings

Growth

• Program expense growth: -9.6% per year; rating input score 0; 7th percentile among comparable filings
• Revenue growth: -7.7% per year; rating input score 0; 1st percentile among comparable filings
• Asset growth: -4.5% per year; rating input score 0; 3rd percentile among comparable filings