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.
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