A Guide to Organizations Supporting the Duchenne Muscular Dystrophy Community

A brief intro to the variety of Organizations Supporting the Duchenne Muscular Dystrophy Community

 Coming Together for a Cure

• Focuses on advancing access to stem cell therapy for Duchenne muscular dystrophy
• Connects families with others who have experience with stem cell therapy
• Focuses on advancing access to stem cell therapy for Duchenne muscular dystrophy
• Advocates for stem cell therapy to be available in the US
• Has connected and helped over 500 families across the globe in their stem cell treatment journey
• Working towards launching the first clinical trial using MSCs for DMD in the US

 Muscular Dystrophy Association (MDA)

• Advances research for treatments and cures for muscular dystrophy and other neuromuscular diseases
• Played a crucial role in bringing 6 FDA-approved treatments to market in 2023
• Launched the MDA Gene Therapy Support Network
• Funds technology management, provides education and resources, and offers summer camps for children and young adults with neuromuscular diseases

 Cure Duchenne

• Recognized as the global leader in research, patient care, and innovation for improving and extending the lives of those with Duchenne
• Focuses solely on accelerating research to find a cure for DMD
• Raised more than $50 million for research, education, and care
• Provides community support through education for parents, caregivers, clinicians, and physical therapists on the best practices for managing DMD
• Runs the CureDuchenne Physical Therapy and Professional Training program

 Little Hercules Foundation

• Dedicated to improving the lives of those affected by Duchenne muscular dystrophy through education, awareness, and funding critical research
• Focuses on supporting promising research projects and collaborating with leading scientists to accelerate the development of treatments and cures
• Provides resources and support to families navigating the challenges of living with DMD, including educational materials and connections to the DMD community
• Hosts fundraising events and campaigns to raise awareness and generate funding for research initiatives

 For Jake’s Sake

• Helps families gain access to much-needed items that give their children battling DMD an improved quality of life
• Assists families in getting grants and raising funds for pool lifts, vehicles, ramps, and more
• Hosts an annual Millennium 5K and accepts donations to support their mission

 Parent Project Muscular Dystrophy (PPMD)

• Fights to end Duchenne by accelerating research, demanding optimal care, and fighting to impact policies at the federal level
• Offers one-to-one meetings for personalized support, DIY fundraising, and a list of certified Duchenne care centers
• Hosts the Race to End Duchenne
• Has invested more than $55 million into DMD research, inspiring an additional $600 million investment from the federal government
• Connects the Duchenne community through the Duchenne Registry, which links individuals and families with clinical trials and research
• Hosts the Annual Conference, the largest, most comprehensive, annual international conference focused entirely on Duchenne

These are just a few of the many organizations that work tirelessly to support the Duchenne muscular dystrophy community by providing resources, education, advocacy, and funding for research. Each organization plays a vital role in improving the lives of those affected by DMD and bringing hope for a better future.

For more resources visit, DMD Resources