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Muscular Dystrophy Association Announces Five Recipient Organizations of Advocacy Collaboration Grants

New York, NY – February 16, 2023 – The Muscular Dystrophy Association (MDA) today announced the five organizations receiving $109,065 in grant funding. The grants will promote and support MDA's key public policy and advocacy initiatives in coordination with awardees to empower people living with neuromuscular diseases to live longer, more independent lives. In the spirit of MDA's commitment to collaboration, the organization is utilizing this grant program to facilitate impactful and cooperative advocacy projects and initiatives. Grantees in this innovative model are: All Wheels Up, Cure CMD, Cure Rare Disease, OPMD Association, Tufts Medical Center (Dr. James Chambers and team), for the following projects:

• All Wheels Up: Fund key crash testing to determine airworthiness of a wheelchair securement system for airplanes
• Cure CMD: Survey members of the CMD (congenital muscular dystrophy) community and expand its grassroots programs and advocacy tactics
• Cure Rare Disease: Commission a policy analysis on how Medicare and Medicaid can or should cover single-administration gene therapies or editing technologies
• OPMD Association: Survey members of the OPMD (oculopharyngeal muscular dystrophy) community to gain a greater understanding of the community and develop future advocacy initiatives
• Tufts Medical Center (Dr. James Chambers and team): Assess the ability for 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 by examining patient eligibility criteria across state Medicaid plans and the largest US commercial plans

"With these grants, the Muscular Dystrophy Association 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. As a convener and leader for over 70 years in support of the neuromuscular community, 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," said Paul Melmeyer, Vice President, Public Policy and Advocacy, MDA.

Applications for the program were announced in 2022 for MDA to collaborate with organizations focused on non-partisan, non-political advocacy initiatives to achieve legislative and public policy victories for the neuromuscular community at the federal, state, local level.

Criteria for grants included:

• Vital research projects to provide much-needed data to further understand the experiences of the neuromuscular disease community to further advocacy priorities
• Opportunities to convene stakeholders in the neuromuscular disease community through in-person and virtual meetings, conferences, and other events
• Programs or toolkits to build, grow, and train grassroots advocates from the neuromuscular disease community
• Other innovative programs, campaigns, or initiatives that can measurably impact one or more of MDA and the collaborating organizations' common advocacy goals

About Muscular Dystrophy Association

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. To learn more visit mda.org and follow MDA on Instagram, Facebook, Twitter, TikTok, LinkedIn, and YouTube.