MDA awards $110K in funding to neuromuscular disease organizations

Five neuromuscular disease organizations will receive grants worth almost $110,000 in total from the Muscular Dystrophy Association (MDA) to fund key public policy and advocacy initiatives.

These grants will fund a diverse range of projects, from surveys and data analyses to device testing, and encompass several different neuromuscular diseases, including Lambert-Eaton myasthenic syndrome (LEMS).

“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,” Paul Melmeyer, vice president of public policy and advocacy at the MDA, said in a press release.

Applications for the Advocacy Collaboration Grants program opened in August 2022. Projects were deemed eligible if they aimed to provide important data about neuromuscular disease communities to further advocacy priorities or foment opportunities to gather stakeholders in these communities.

Also eligible were initiatives geared toward building and training grassroots advocates from these communities, or other programs or campaigns that could have a measurable impact on the common advocacy goals of the candidate organization and the MDA.

The five organizations or groups receiving the total of $109,065 in grant funding are All Wheels Up, Cure CMD, Cure Rare Disease, the OPMD Association, and James Chambers, PhD, and his team at Tufts University Medical Center in Boston.

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.

All Wheels Up will use the grant to fund crash testing operations for a wheelchair securement system for airplanes. Meanwhile, Cure CMD and the OPMD Association will use their funding for community surveys and to increase and develop grassroots programs and advocacy initiatives dedicated to congenital muscular dystrophy (CMD) and oculopharyngeal muscular dystrophy (OPMD), respectively.

“The voices of the CMD community have the power to bring about positive change, both locally and nationally. This grant will enable us to create programs and tools to equip the CMD community to advocate for their needs,” Lani Knutson, Cure CMD’s advocacy team lead, said in another press release.

Both Cure Rare Disease and Chambers’ research team will use the funding for deep dives into the U.S. public and private health insurance landscape.

Cure Rare Disease plans to commission a policy analysis on how Medicare and Medicaid cover can, or should, work when it comes to single-administration gene therapies or editing technologies.

As for Chambers’ team, their research project aims to examine therapy accessibility for patients with neuromuscular diseases, including LEMS, by assessing patient eligibility criteria in both state Medicaid plans and those of large private insurance companies.

“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,” Melmeyer said.