987 Photos and videos
With your help, we’re identifying gaps in care, analyzing clinic practices, and developing a roadmap for quality care, ensuring adults have access to the coordinated, compassionate support they deserve. Give today to support PPMD’s Adult Care Initiative: donate.parentprojectmd.org/c…
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Navigating #Duchenne #musculardystrophy genetics can feel overwhelming, but you don’t have to do it alone. We’re joining @JettFoundation Foundation for a webinar on 4/30 to help families better understand the genetic side of Duchenne. Register now: jettfoundation.org/event/com…
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PPMD has provided $250,000 in funding to @SecretomeTx through PPMD Venture Pathways to advance the development of STM-01, Secretome's neonatal cardiac progenitor cell (nCPC) product for the treatment of #Duchenne -associated cardiomyopathy. Learn more:
parentprojectmd.org/ppmd-pro…
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PPMD Together is headed to Philly! Register now for our first PPMD Together event of 2026 — join us in Philadelphia, PA, on April 24-25 for a weekend of gratitude, connection, and progress! Learn more about the agenda, accommodations, and register today: donate.parentprojectmd.org/e…
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📢 News: @Capricor has announced additional analyses and new functional outcomes data from the Phase 3 HOPE-3 clinical trial of Deramiocel in #Duchenne. Learn more: parentprojectmd.org/capricor…
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📢 News: @Solid_Bio has shared updated positive interim data from the ongoing Phase 1/2 INSPIRE DUCHENNE clinical trial of SGT-003. Learn more: parentprojectmd.org/solid-bi…
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📢 News: @REGENXBIO has announced new positive interim data from the Phase I/II AFFINITY DUCHENNE trial of RGX-202. Learn more: parentprojectmd.org/regenxbi…
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Together with @DuchenneMD, we are pleased to announce @Troy_Balderson, @SenSusanCollins, @SenAmyKlobuchar, Congresswoman Doris Matsui, and @SenatorWicker as recipients of the 2026 Advocacy Leadership Awards! #PPMDAdvocacy
parentprojectmd.org/ppmd-and…
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🏛️ 📣 PPMD’s 2026 Advocacy Conference kicks off TODAY! Here’s a quick rundown by the numbers:
📌 120 Duchenne and Becker advocates
📌 Representing 31 states
📌 2 days of advocating on Capitol Hill
📌 134 Congressional meetings
#EndDuchenne #PPMDAdvocacy
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Exciting news! We are proud to share our partnership with the Cooperative International Neuromuscular Research Group (CINRG) to advance the expanded Duchenne Natural History Study (eDNHS) study.
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The eDNHS is an expanded continuation of the previous Duchenne Natural History Study, which ran from 2005-2016, and will facilitate development and approval of novel therapies and improve global clinical practice and policy guidelines for the #Duchenne community.
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Joining PPMD in support of the eDNHS study is @Insmed; ITF Therapeutics ; @NSPharmaInc; @Santhera (Switzerland); @Sarepta; @Solid_Bio; @trinds_nmd; and @UCDavisHealth.
Learn more join us 4/1/26 for a webinar: parentprojectmd.org/ppmd-par…
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We are disappointed to learn the news that @Roche has made the difficult decision to terminate their Phase 2 SHIELD DMD study evaluating satralizumab for bone health in Duchenne. Read more about this decision:
parentprojectmd.org/roche-an…
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The hotel reservation deadline for PPMD’s 2026 Advocacy Conference is extended to Tuesday, February 17!
Don’t miss your chance to join us March 8-10th in #DC to advocate for the Duchenne and Becker community in the nation’s capital!
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✨ Have you registered for PPMD’s 2026 Annual Conference? We invite you to join us in Orlando, June 25-27, for a little magic. Book your stay through PPMD’s hotel block at Disney’s Coronado Springs Resort! And be sure to register by 5/14 for best rates. parentprojectmd.org/conferen…
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❗BREAKING NEWS WEBINAR: Join PPMD and Sarepta for a breaking news community webinar TODAY, Monday, January 26, at 4:00 PM ET to discuss these topline results and answer questions from the community. parentprojectmd.org/sarepta-…
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Recently @Solid_Bio shared updates on the company’s gene therapy program for the treatment of #Duchenne, with 33 participants now dosed in the ongoing Phase 1/2 INSPIRE DUCHENNE clinical trial of SGT-003.
parentprojectmd.org/solid-bi…
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Registration is open for PPMD’s 2026 Advocacy Conference, taking place march 8-10 in Washington, DC! Learn more and register today: donate.parentprojectmd.org/e… #PPMDAdvocacy
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