
About Us
Muscular Dystrophy Association Announces Eight Recipient Organizations of Advocacy Collaboration Grants
The Akari Foundation, All Wheels Up, Christopher & Dana Reeve Foundation, Cure CMD, Cure LGMD2i, Cure Rare Disease, FSHD Society, and the Hereditary Neuropathy Foundation are recipients of MDA Advocacy Collaboration Grants.
New York – Monday, February 3, 2025 – The Muscular Dystrophy Association (MDA) is proud to announce $160,500 in funding from its MDA Advocacy Collaboration Grant Program, awarding the following organizations and their projects: The Akari Foundation, All Wheels Up, Christopher & Dana Reeve Foundation, Cure CMD, Cure LGMD2i, Cure Rare Disease, FSHD Society, and Hereditary Neuropathy Foundation.
The MDA Advocacy Collaboration grants are awarded to promote and support key public policy and advocacy initiatives that will benefit the neuromuscular disease community, removing barriers and empowering people to live longer, more independent lives. Each of the grantees proposed a collaborative project designed to support and enhance neuromuscular disease advocacy and grassroots networks.
“The Muscular Dystrophy Association is proud to announce the latest recipients of the MDA Advocacy Collaboration Grants. Building on last year’s success, we are funding these eight organizations whose projects support empowerment and independence, meaningful and innovative treatment development, and access to healthcare and opportunities for the neuromuscular disease community,” said Paul Melmeyer, Executive Vice President, Public Policy and Advocacy, MDA. “From personalized grassroots advocacy to advocating for new research funding streams, gene therapy coverage proposals to air travel safety improvements for wheelchair users and beyond, Muscular Dystrophy Association will continue looking for new ways to support the neuromuscular disease community to best serve their needs for everyday life. We are looking forward to seeing the meaningful progress these innovative projects will bring to the lives of people living with neuromuscular diseases.”
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).
- “We are immensely grateful to the Muscular Dystrophy Association for their generous grant supporting our advocacy efforts at The Akari Foundation,” said Luisa Leal, Founder and CEO, The Akari Foundation. “This funding will empower us to continue championing the rights and needs of Hispanic families affected by rare neuromuscular diseases, ensuring their voices are heard, and that their journeys are supported with equity and compassion. Together, we are making a meaningful difference in the lives of those who need it most.”
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.
- “We are deeply grateful to the Muscular Dystrophy Association for their generosity and unwavering commitment to creating a wheelchair spot on commercial airplanes,” said Stephen Cullen, Board Chair, All Wheels Up. “The funding grants will allow us to complete one more round of crash tests of restraint systems against FAA test criteria at the National Institute of Aviation Research facility before the FAA issues guidance on the standards to the industry. Additionally, we will also be able to complete a research paper on the medical necessity of a wheelchair spot on commercial airplanes, intended for publication, supported by primary research from the crash tests. Both initiatives will be instrumental in our advocacy efforts in Washington. I cannot emphasize enough how important these grants are to getting these studies underway and completed. We view Muscular Dystrophy Association as an unwavering partner in this mission.”
- “Muscular Dystrophy Association has been an incredible partner since day one of our organization,” said Michele Erwin, Founder and CEO, All Wheels Up. “We are grateful for both their financial support and for their belief in our goal to put a wheelchair spot on planes. Our success has happened in part to the generosity of Muscular Dystrophy Association. The funding provided allows us to perform research that one day soon will make true accessibility happen.”
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.
- “The Reeve Foundation is thrilled to collaborate once again with Muscular Dystrophy Association to enhance our Regional Advocacy Trainings,” said Gerard Arnum, Grassroots Advocacy Manager, Christopher & Dana Reeve Foundation. “These enhanced trainings will allow us to reach underserved areas across the country, where access to vital resources for individuals impacted by paralysis and neuromuscular disease (NMD) is limited. Together, we are fostering greater understanding of disability policy, civic engagement, and effective advocacy to create meaningful change for our communities.”
Cure CMD will develop a CMD Advocacy Advisory Council, including skill building for advocates, a strategic advocacy plan, and one-on-one advocacy training.
- “Cure CMD is pleased to continue our partnership with Muscular Dystrophy Association in order to build on our past advocacy work,” said Lani Knutson, Advocacy Team Lead, Cure CMD. “This year's Advocacy Collaboration Grant will enable us to organize our own advocacy event in 2025. During this event, we plan to train CMD advocates to tell their story effectively, to update the CMD community on current legislation, and to meet with legislators to discuss issues important to the CMD community. We could not do this important work without the generous support of MDA.”
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.
- "We are thrilled to be accepted for this generous MDA Advocacy Collaboration grant,” said Kelly Brazzo, CEO, CureLGMD2i. “We are looking forward to building upon the collaborative partnership between CureLGMD2i and Muscular Dystrophy Association while utilizing the many advocacy tools they offer us to further engage and educate our LGMD community.”
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.
- “Cure Rare Disease is excited and grateful for the continued partnership with the Muscular Dystrophy Association,” said Rich Horgan, Founder and CEO, Cure Rare Disease. With this support, we will be able to further our work toward establishing pathways for reimbursing potentially life-saving therapeutics for populations that have been historically neglected and forgotten.”
FSHD Society will assess and explore Congressionally Directed Medical Research Program (CDMRP) Peer-Review Research eligibility.
- “The FSHD Society is thrilled to have the support of the Muscular Dystrophy Association as we work toward adding FSHD to the eligibility list of the Peer Reviewed Medical Research Program (PRMRP),” said Anna Gilmore, Senior Director for Education and Advocacy, FHSD Society. Leveraging this investment by the MDA opens up new avenues for needed research funding, alleviating the burden on families living with this relentless rare disease. In addition to the grant itself, I am grateful to have the Muscular Dystrophy Association's backing on this effort. To have a powerhouse like the MDA join us on this project creates tremendous momentum and underscores the importance of the initiative. The FSHD Society is excited to be collaborating on this work and can't wait to get started!”
Hereditary Neuropathy Foundation will test and evaluate BioSensics wearable technologies for potential use within Charcot-Marie-Tooth clinical trials.
- “We are grateful to the MDA for their support of the CMT BioSensics Wearable Study to expand HNF’s strategy to collect robust longitudinal data, capture more sensitive outcome measures, and monitor CMT symptoms with greater precision than ever before,” said Allison Moore, CEO, Hereditary Neuropathy Foundation. “This groundbreaking study was developed to enhance CMT clinical trial design and is aligned with the FDA guidance on DHTs.”
Background on the MDA Advocacy Collaboration Grants Program
MDA launched the Advocacy Collaboration Grants Program in 2022, demonstrating its commitment to fostering partnerships that advance the health, well-being, and quality of life for people living with neuromuscular diseases. In 2022, MDA awarded $100,000 in grants to five organizations dedicated to driving impactful change for the neuromuscular disease community. This innovative program was created to accelerate the development and delivery of meaningful treatments, expand access to quality healthcare, and support initiatives that enhance life opportunities for people living with muscular dystrophy, ALS, and any of over 300 related neuromuscular diseases. In 2023, the program provided over $140,000 in grants to seven organizations, reinforcing MDA’s dedication to empowering community-driven solutions. These grants supported projects that aligned with MDA’s mission to create a world where people living with neuromuscular diseases live longer, more independent lives. This year’s grant applications opened in August 2024 with a focus on non-partisan advocacy initiatives that are likely to advocate positive changes within the neuromuscular community that lead to federal, state, and local initiatives and laws. Read more about the previous year’s grantees in MDA’s Quest Media here.
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.
To learn more and sign up to advocate with Muscular Dystrophy Association, visit MDA.org/Advocacy.
Press inquiries, email press@mdausa.org.
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 over 300 other neuromuscular conditions. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating support and inclusion of families living with neuromuscular disease. 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, X, Threads, TikTok, LinkedIn, and YouTube
About Muscular Dystrophy Association’s 75th Anniversary
In 2025, the Muscular Dystrophy Association proudly marks 75 years legacy, impact and momentum in the fight against neuromuscular diseases. Since our founding, MDA has been at the forefront of research breakthroughs, providing access to comprehensive care, and championing the rights of people living with muscular dystrophy, ALS, and over 300 other neuromuscular diseases. This milestone has been made possible by generations of dedicated support from people living with neuromuscular disease, their families, researchers, clinicians, volunteers, and donors—who boldly drive our mission forward. As we look ahead, we remain committed to honoring this legacy, building on the impact we’ve made together, and continuing our momentum toward transformative progress for people living with neuromuscular disorders.