by: Parent Project Muscular Dystrophy
Need direct support for yourself or your child living with dystrophinopathy? PPMD’s PPMD For You program is here to help!
This personalized program lets you schedule a one-on-one meeting with a knowledgeable PPMD team member to access individualized resources in the areas of care, research, and daily life. Whether you’re looking for guidance, answers, or just someone to talk to, PPMD For You offers expert support on a variety of topics. Please see the below table detailing topics:
Meeting Type Description
New Diagnosis Support for families navigating a recent diagnosis (within the last 2 years)
Care Coordination Care-related questions and help finding care centers
Navigating Resources & Benefits Understanding access, resources, and insurance
School & Education Understanding IEP vs 504 and challenges navigating school resources
Genetics, Clinical Trials, & The Duchenne Registry Understanding genetic variants, discussing clinical trials, Decode Duchenne program, and the Duchenne Registry
Enhancing Independence & Social Experiences Transitioning to adulthood: life after high school, job readiness, independent living, and establishing meaningful relationships
Durable Medical Equipment & Home Modifications Information on durable medical equipment, home modifications, and life hacks
Advocacy Getting involved with PPMD's Duchenne and Becker advocacy efforts
DIY Fundraising Information on setting up fundraisers
Race to End Duchenne Questions about participating in a race program
Connect with the Community Assistance finding connection in the community
If you don’t see a topic listed, email careteam@parentprojectmd.org and we can connect you with the most appropriate resource. PPMD’s expertise is rooted in the U.S., where we have the deepest knowledge of local resources and systems.
