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