MDA Announces Advocacy Collaboration Grant Projects

In exciting news for the neuromuscular disease community, MDA’s Advocacy team has just announced the next recipients of MDA Advocacy Collaboration Grants! Applications opened in August 2023 with a focus on non-partisan advocacy initiatives that are likely to result in positive policy outcomes at the federal, state, and local levels.

A total of seven organizations have been awarded a combined $140,000, spanning various aspects of neuromuscular disease advocacy and community support, including engagement with healthcare professionals, grassroots advocacy, more inclusive clinical trials, and more. This year’s grantees will help continue MDA’s commitment to advocating for and supporting individuals living with neuromuscular diseases and developing bipartisan solutions that benefit the neuromuscular community.

The grantees will develop the following projects:

• Christopher & Dana Reeve Foundation will design and create a digital grassroots advocacy toolkit.
• Cure VCP Disease will evaluate innovative clinical trial endpoints for use in VCP disease with the intent of making clinical trials better targeted for the patient community.
• Cure Rare Disease will expand last year’s award to develop policy and coverage approaches for n-of-1 gene therapies by publishing the proposal in a whitepaper and conducting meetings and focus groups.
• Cure CMD will develop a CMD Advocacy Advisory Council, including skill building for advocates, a strategic advocacy plan, and one-on-one advocacy training.
• Child Neurology Foundation will commission a Community Needs Assessment to ascertain issues facing the neuromuscular disease community.
• All Wheels Up will test a variety of Wheelchair Tie-Down and Occupant Restraint Systems (WTORS) for compliance with aircraft seating standards.
• The Akari Foundation will engage healthcare professionals, community, and advocacy groups around cultural sensitivities, addressing rare disease, specifically DMD, in the Hispanic community.

In awarding these grants, MDA prioritized projects that focused on collecting illustrative data on the experiences of those living with neuromuscular diseases, stakeholder engagement and convenings, enhancing and supporting grassroots advocacy networks, as well as opportunities to accomplish shared advocacy goals among the collaborating organizations.

We are excited to watch these projects develop, and we will share news and notes related to the projects as they happen!