Resources for Families
Advocacy Groups and Parent Organizations
Parent Project Muscular Dystrophy
There is substantial information written for families and a highly informative yearly conference each summer organized by Parent Project Muscular Dystrophy that provides opportunities to connect with other DMD families. PPMD also organizes lobbying efforts on behalf of increased federal funding for DMD research.
An annual conference directed at providing educational materials and updates on scientific and clinical progress in DMD is organized by Parent Project Muscular Dystrophy. We recommend attending the annual conference if you can. It is a great way to meet other parents, as well as clinical and research leaders in the field.
Learn more about Parent Project Muscular Dystrophy.
Duchenne Registry
A program of PPMD which serves as a central hub linking the resources and needs of the Duchenne/Becker muscular dystrophy community: young men with Duchenne; their families and caregivers; and the provider community: clinical care providers, policymakers, industry professionals and the medical research fields. We offer registered members resources to: assist with early, appropriate and least invasive diagnosis; explore the benefits and limitations of genetic testing; offer access to resources and services, including care and treatment; and assist in understanding and development of new treatment trials.
Learn more about Duchenne Registry.
Cure Duchenne
A local non profit organization founded by Debra and Paul Miller that supports basic and clinical research throughout the world leading to treatments for DMD. Their website offers opportunities for fundraising and updates information on new trials in DMD and research, and has links to useful services.
Learn more about Cure Duchenne.
Muscular Dystrophy Association
A national organization that supports a network of clinics and research for many neuromuscular diseases including DMD. They also have a variety of resources to help families access equipment and attend special summer camps.
Learn more about the Muscular Dystrophy Association.
Walking Strong
An organization with a mission to build a supportive community to help end Duchenne Muscular Dystrophy. They raise money for ground-breaking research, spreading awareness, and provide aid to children and families with Duchenne.
Learn more about Walking Strong.
Cooper's Cure
Everyone has been through difficult situations that may have seemed impossible to overcome. In these difficult times, it is crucial that you stay strong and stay motivated, you will be surprised to find that nothing can stand in your way.
Learn more about Cooper's Cure.
Team Joseph, Duchenne Family Assistance Program
Little Hercules Foundation and Team Joseph have a strong history of working together to fund promising Duchenne research. We decided that while we believe in the promise of future treatments, we also see the need to help families right now. In this moment. We identified two priorities—to offer families financial assistance with expenses related to the care of a child or young adult with Duchenne, and to provide help and expertise to families who need access to recommended treatments and equipment, clinical care, and social services.
Learn more about Team Joseph, Duchenne Family Assistance Program.
Additional Resources
For emergency guidelines and surgery questions for patients with Duchenne:
Education Matters is a helpful booklet provided by PPMD that has valuable information for patients and teachers of children with Duchenne.
PPMD Webinar
"DuchenneConnect Study: Identification of Effective Therapies and Observation of Disease Severity," Stanley F. Nelson, MD, Co-Director, Center for Duchenne Muscular Dystrophy.
Responses to questions from DuchenneConnect Presentation by Dr. Nelson. There were a number of additional questions for which there was not sufficient time after the presentations. These questions and answers are posted here.