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Muscular Dystrophy Association Announces Seven Recipient Organizations of Advocacy Collaboration Grants

The Akari Foundation, All Wheels Up, Child Neurology Foundation, Cure CMD, Cure Rare Disease, Cure VCP Disease, and Christopher & Dana Reeve Foundation are recipients of MDA Advocacy Collaboration Grants.

New York, Thursday, February 1, 2024 – Today, the Muscular Dystrophy Association (MDA) announced $140,000 in funding from its MDA Advocacy Collaboration Grant Program, awarding the following organizations and their projects: The Akari Foundation, All Wheels Up, Child Neurology Foundation, Christopher & Dana Reeve Foundation, Cure CMD, Cure Rare Disease, and Cure VCP Disease.

The MDA Advocacy Collaboration grants are awarded to promote and support key public policy and advocacy initiatives that will benefit people in 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.

“Muscular Dystrophy Association is proud to announce the recipients of the MDA Advocacy Collaboration Grants. We will continue to build on last year’s success by funding these seven organizations and their projects that support empowerment and independence, meaningful and innovative treatment development, and access to health care and opportunities for the neuromuscular disease community,” said Paul Melmeyer, Vice President, Public Policy and Advocacy, MDA. “From personalized grassroots advocacy, to gene therapy coverage proposals, to air travel safety improvements for wheelchair users and beyond, MDA will continue looking for new ways to support the neuromuscular disease community to best serve their needs. We are looking forward to seeing the progress made through these noteworthy, innovative projects designed to bring impact and change for the neuromuscular disease community.”

• The Akari Foundation will engage healthcare professionals, community and advocacy groups around cultural sensitivities addressing rare disease, specifically DMD in the Hispanic community.
  • “Gratitude knows no bounds as we extend our heartfelt thanks to the Muscular Dystrophy Association for their generous $25,000 grant to the Akari Foundation,” said Luisa Leal, Founder and CEO of the Akari Foundation. “This invaluable support propels our mission forward in advocating for the Hispanic community, empowering us to make a lasting impact. Together, we strive toward a brighter future where compassion and collaboration create pathways for change. Thank you for being the catalyst that fuels our advocacy efforts.”
• All Wheels Up will test a variety of Wheelchair Tie-Down and Occupant Restraint Systems (WTORS) for compliance with aircraft seating standards.
  • “All Wheels Up is honored to partner with the MDA on Advocating for a wheelchair spot on airplanes and improving the future of accessible air travel,” said Michele Erwin, Founder and CEO of All Wheels Up.
• Child Neurology Foundation will commission a Community Needs Assessment to ascertain issues facing the neuromuscular disease community.
  • “The Child Neurology Foundation is thrilled to be a recipient of MDA’s Advocacy Collaboration Grants program to support the development of a comprehensive Needs Assessment Survey,” said Katie Hentges, Director of Programs. “The surveys of the two child neurology stakeholder groups - medical professionals and caregivers of children living with neurologic conditions - will provide vital data to further understand the experiences of the NMD community and enable the advancement of advocacy priorities.”
• Cure CMD will develop a CMD Advocacy Advisory Council, including skill building for advocates, a strategic advocacy plan, and one-on-one advocacy training.
  
  • “The MDA Advocacy Collaboration Grant will enable Cure CMD to continue its legislative advocacy work and provide skills training, resources, and advocacy opportunities for the CMD community,” said Lani Knutson, Cure CMD Advocacy Team Lead. In addition, Cure CMD will build an Advocacy Advisory Council to set priorities and drive advocacy on issues important to the community. We are grateful for the opportunity and for MDA's invaluable support.”
• 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.
  • “We are pleased to continue our collaboration with the MDA to forge a path to financing the development and application of therapeutics for ultra-rare disease patients,” said Rich Horgan, Founder and CEO of Cure Rare Disease. As a result of the first grant, we successfully developed a framework to finance ultra-rare therapeutic development and, with the support of this second grant, will pressure test and iterate upon this framework among different stakeholder groups, ultimately coalescing in a publication to share this pathway. Through this work, our goal is to develop a viable path to financing these life-saving therapies, so no patient is left behind simply because their disease is too rare.”
• 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 VCP Disease is excited to collaborate with Emmes Endpoint Solutions and Nationwide Children's Hospital to explore innovative ways to make clinical trials more accessible and sensitive through remote outcome measures,” said Allison Peck, CFO of Cure VCP Disease. “We are thankful to the MDA for helping us evaluate the use of home-based videos to measure disease progression in VCP disease patients.”
• Christopher & Dana Reeve Foundation will design and create a digital grassroots advocacy toolkit.
  • “The Reeve Foundation is grateful to collaborate with MDA on the opportunity to create a grassroots toolkit that is accessible and informative for the community to learn about disability policy issues, civic engagement, and how to become an effective advocate,” said Kimberly Beer, Senior Director of Public Policy & Advocacy.

Applications opened in August 2023 with a focus on non-partisan advocacy initiatives that are likely to result in positive policy outcomes for the neuromuscular disease community at the federal, state, and local levels.

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.

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, X, Threads, TikTok, LinkedIn, and YouTube.