MDA Applauds Expanded US FDA Approval of ELEVIDYS Gene Therapy for DMD Patients Ages 4 and Above

About Us

Our mission is to empower people living with neuromuscular diseases to live longer, more independent lives.

Paul Melmeyer

Vice President Paul Melmeyer can address:

(1) MDA’s advocacy efforts to ensure people with neuromuscular diseases have better access to care and therapies from Day 1; (2) MDA’s advocacy efforts to accelerate therapeutic development; (3) MDA’s advocacy efforts to support empowerment and independence for the neuromuscular disease community surrounding issues such as accessible air travel, family educational programming, promoting disability employment incentive policies and accessible, healthy voting for individuals living with disabilities and/or complicating health factors.

Headshot of Paul Melmeyer
Paul Melmeyer, Vice President, Public Policy and Advocacy, Muscular Dystrophy Association

Paul Melmeyer Vice President, Public Policy and Advocacy, MDA Bio:

Paul Melmeyer serves as the Vice President, Public Policy and Advocacy, at the Muscular Dystrophy Association (MDA). In this role, Paul leads MDA’s policy and advocacy initiatives pertaining to public health, therapeutic development, access to care, and disabilities. Prior to joining MDA, Paul spent over six years with the National Organization for Rare Disorders (NORD). At NORD, Paul led the Federal policy operations in developing and advocating for the enactment and implementation of pro-rare disease patient policy. Paul also holds a Master of Public Policy (MPP) from the George Washington University.

Quotes from Paul Melmeyer

“Our advocacy program includes pushing for access to quality health insurance, ensuring specialists are in-network, getting the right drugs on the formulary and coverage for pre-existing conditions. Lately, we’ve also focused on ensuring that telehealth is available to our community, especially given this community’s mobility challenges.” – Developments in Specialty Pharmacy

“Today’s overwhelmingly bipartisan House passage of the ACT for ALS further emphasizes the importance of enacting this legislation as soon as possible. Now it is time for the Senate to act. The Muscular Dystrophy Association stands behind this legislation and is eager to work with the bill sponsors and Senate leaders to make this a reality.” – Biospace

“In order for new treatments to truly make a difference, it must be meaningful for the community it is intended for.” – Pompe Disease News


  • Advocacy and care for disabled individuals
  • Effective policy change
  • Legislative reformation for those with disabilities

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Paul Melmeyer in the Media