2024 MDA Advocacy Collaboration Grantees are Working Towards Change

Advocacy for the neuromuscular disease community is just one of the key ways MDA works to support the neuromuscular disease community. To expand our impact and undertake projects of importance to the community, we strive to foster partnerships that advance the ability of people with neuromuscular diseases to live longer, healthier, and more empowered lives.  Through advocacy initiatives and partnerships, we want the voices of the MDA community to be recognized at every level of policymaking.

MDA launched the Advocacy Collaboration Grants Program in 2022 to help achieve this goal. Now, in our third year of the program, we would like to introduce you to the 2024 MDA Advocacy Collaboration Grantees! Together, these groups received a total of $160,500 in grant funding to support their important advocacy projects.

This year’s list of grant recipients is comprised of a wide variety of neuromuscular disease patient advocacy organizations, each with their own unique projects developed to support their communities. Each grantee proposed a collaborative plan designed to support and enhance their neuromuscular disease advocacy and grassroots networks. This year’s grant applications opened in August 2024, with a focus on non-partisan advocacy initiatives likely to advance positive changes within the neuromuscular community and lead to federal, state, and local initiatives and laws. Grantees’ projects were selected in December 2024.

2024 Advocacy Collaboration Grant Recipients:

• The Akari Foundation will provide materials, webinars, training, and more in Spanish to the Hispanic community with rare diseases. There will be a specific focus on Duchenne muscular dystrophy (DMD), spinal muscular atrophy (SMA), and limb-girdle muscular dystrophy (LGMD).
• All Wheels Up will continue to test a variety of Wheelchair Tie-Down and Occupant Restraint Systems (WTORS) for compliance with aircraft seating standards, in addition to drafting and publishing an article on the medical necessity of wheelchair spots on commercial airplanes.
• Christopher & Dana Reeve Foundation will expand upon its grassroots advocacy toolkit from last year’s grant cycle by conducting Regional Advocacy Trainings in underserved areas.
• Cure CMD will expand its programing around the CMD Advocacy Advisory Council, including an in-person or virtual skill building event for advocates.
• Cure LGMD2i will continue the development of its grassroots advocacy program by hosting and conducting webinars and other sessions to build familiarity with grassroots advocacy among the LGMD2i patient population.
• Cure Rare Disease will expand last year’s award to continue their project to create an innovative coverage and reimbursement model for “angel” therapies for rare and ultra-rare disease patients.
• FSHD Society will assess and explore Congressionally Directed Medical Research Program (CDMRP) Peer-Review Research eligibility.
• Hereditary Neuropathy Foundation will test and evaluate BioSensics wearable technologies for potential use within Charcot-Marie-Tooth clinical trials.

Collaboration is Key

Fundamentally, there is strength in numbers when engaging in advocacy, which makes MDA’s Advocacy Collaboration Grants a vital part of creating change. By supporting these organizations, MDA is fostering collaborative advocacy that empowers advocates at the local, state, and national level to make change happen.

What’s Next

We are excited to continue working with our grantees to advance and support public policy goals for the neuromuscular community and will continue to share the impactful work that they are developing. Building strong partnerships is one of the many ways that our Advocacy team works to support the MDA community.

To learn more about MDA Advocacy, visit MDA.org/advocacy.