Muscular Dystrophy Association Awards 5 Advocacy Collaboration Grants

The Muscular Dystrophy Association (MDA) named 5 organizations to receive funding for their efforts to support MDA’s key public policy and advocacy initiatives. Each grant recipient will receive $109,065 to help in their efforts to empower people living with neuromuscular disease to live longer, more independent lives. Recipients were selected based on a number of criteria, including vital research projects; opportunities to convene stakeholders in the neuromuscular community; programs or toolkits to build, grow, and train stakeholders; and innovative programs, campaigns, or initiatives.  

The 5 grantees and their initiatives are listed below:

• All Wheels Up: Will fund crash testing for the airworthiness of a wheelchair securement system for airplanes
• Cure CMD: Willsurvey members of the congenital muscular dystrophy (CMD) community and expand its grassroots programs and advocacy tactics
• Cure Rare Disease: Willcommission a policy analysis on how Medicare and Medicaid can or will cover single-administration gene therapies or editing technologies
• OPMD Association: Will survey the oculopharyngeal muscular dystrophy (OPMD) community for a greater understanding of their needs and to develop advocacy initiatives
• Tufts University Medical Center (Dr. James Chambers and team): Willassess the ability of patients living with spinal muscular atrophy (SMA), Duchenne muscular dystrophy (DMD), amyotrophic lateral sclerosis (ALS), generalized Myasthenia gravis (MG), and Lambert-Eaton myasthenic syndrome (LEMS) to access therapies through Medicaid and large US commercial insurance plans

“With these grants, MDA is thrilled to contribute to innovative policy and advocacy initiatives at our partnering organizations that will hopefully lead to better treatments, care, and accessibility for the neuromuscular disease community,” said Paul Melmeyer, vice president, public policy and advocacy, MDA. “MDA’s Advocacy Collaboration Grants program aims to facilitate impactful and cooperative advocacy projects and initiatives, since no individual organization can solve for every challenge or remove every barrier faced by individuals and families across the neuromuscular community.”