Ryder (17) and Luke (15) are teen brothers who both have Duchenne muscular dystrophy. When they were first diagnosed, their family of 6 was able to remain in their home. Once their physical condition began declining, their parents knew they would need more space for wheelchairs and equipment, and they would need to be on a first level.READ MORE +
Our founder, Marissa, represents millions of Americans with a rare disease as the only patient advocate to speak at this Congressional Briefing focused on the Everylife Foundation's "Economic Burden of Rare Disease" study.
The story of the pain and the unexpected peace of Joseph's full-time use of a power wheelchair.Read More +
Team Joseph teams with PPMD to fund research to address the causes of dilated heart failure in DMD.Learn More +
Our founder, Marissa Penrod addresses clinical trials, and their impact, at a Duchenne Policy Forum hosted by Parent Project Muscular Dystrophy (PPMD).READ MORE +
Duchenne Patient-Focused Compass Meeting – our founder, Marissa, speaks before the FDA, drug development companies, medical professionals and the community about the realities of life with Duchenne. The meeting, put together by Parent Project Muscular Dystrophy, informed a policy agenda and charted a course for collaborative action.