This past weekend, PPMD held its last in person PPMD Together event of 2025 in Charlotte, North Carolina. Over two days, families, individuals with Duchenne and Becker muscular dystrophy, clinicians, researchers, and industry partners gathered to connect, build community, and learn together.
Throughout the event, attendees were able to share their stories and experiences with each other in a close knit setting. Attendees had the chance to meet local vendors, therapists, and industry partners to discover resources and support close to home.
During the meeting, panelists spoke about navigating life with Duchenne and Becker, sharing their diagnostic journeys, decision-making experiences, and the unique challenges and perspectives of adulthood with Duchenne. PPMD’s Adult Advisory Committee (PAAC) member, Reece Littleton, shared his viewpoint on Duchenne and accessibility, “As a community, we should strive to allow everyone access to the Duchenne community, as we all have something in common, and this commonality can build bridges.”
Additionally, panelists spoke about the importance of finding community and their motivations behind getting involved. Some opportunities to get involved include:
- Race to End Duchenne
- Advocacy at both the state and federal levels
- Creating awareness and education for carriers & females with dystrophinopathy
- Regional PPMD Connect Groups
- Participating in the Duchenne Registry
- And more!
No matter where you are in the journey, PPMD remains committed to providing a place of belonging and community for every individual and family affected by Duchenne and Becker muscular dystrophy. If you are looking for ways to get involved or find support, schedule a time to meet with the PPMD team here or reach out to careteam@parentprojectmd.org.
*Save the date and join PPMD for our final PPMD Together: Virtual Edition on Wednesday November 12th at 7pm EST. Registration opens soon!
To be notified of registration for PPMD Together:Virtual Edition and to stay up to date with future events and opportunities, join our mailing list here.
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