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The recent dissolution of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) has created uncertainty on the status of the decision to add #Duchenne to the list of conditions recommended for nationwide #newbornscreening.

Join us 4/23 at 1 PM ET for a webinar w/ Sarepta Therapeutics as they share latest updates on their gene therapy program. Additionally, Dr. Chet Villa and Dr. Craig McDonald, investigator in the EMBARK study of ELEVIDYS, will offer clinical perspectives. parentprojectmd-org.zoom.us/webinar/regist…

Last week, PPMD and Muscular Dystrophy Association provided insights into the current status of the #Duchenne nomination to the federal RUSP for #newbornscreening following the dissolution of the ACHDNC. Watch the recording now: parentprojectmd.org/watch-duchenne…

Webinar recording: Sarepta Therapeutics recently joined PPMD to share the latest updates on their #genetherapy program. Watch the recording: parentprojectmd.org/watch-sarepta-…

We are excited to unveil the agenda for PPMD’s 2025 Annual Conference, taking place June 19–21 in Las Vegas! You don't want to miss it – register today to join us in June! web.cvent.com/event/ed1287ea…

Great news! Early Bird registration for PPMD’s 2025 Annual Conference has been EXTENDED to May 8! You don't want to miss it – register today to join us in June! parentprojectmd.org/conference

The Duchenne Registry is designed as a longitudinal study, collecting information from the same people over time. Providing new snapshots helps researchers understand new therapies, track care practices, and plan and recruit for clinical trials. parentprojectmd.org/share-your-now…

Medicaid is not just a line item. It provides access to specialists, medical equipment, therapies, and long-term care that are often out of reach through private insurance. Take action: Tell your representatives to protect #Medicaid. engage.parentprojectmd.org/2025-medicaidc…

Your home and day-to-day routines should work for you. PPMD’s Knight Hacks offers practical tips for making everyday tasks for individuals living with #Duchenne and #Becker smoother. Check out PPMD Knight Hacks for innovative solutions for home: parentprojectmd.org/knight-hacks/h…

This Mother’s Day, we celebrate the amazing mothers, grandmothers, stepmothers, and mother figures in our community. You show us what it means to lead with love, lift others up, and face every day with strength and grace. Happy Mother’s Day from all of us at PPMD!

PPMD, in partnership with the OPTIMIZE DMD Consortium, is proud to announce the publication of the updated version of the PJ Nicholoff Steroid Protocol! Learn more, download PJ’s Protocol, and share it with your care team: parentprojectmd.org/pj

Join PPMD and Dyne Therapeutics on 6/4 at 1 PM ET for a webinar on the DELIVER trial evaluating DYNE-251. The Dyne team will provide updates on the Phase 1/2 global study for individuals living with #Duchenne who are amenable to exon 51 skipping. parentprojectmd.org/events/webinar…

TX Gov Abbott has officially signed Senate Bill 1044 into law, requiring the TX Dept of State Health Services to add #Duchenne to the state’s #newbornscreening panel. Learn more: parentprojectmd.org/governor-abbot…

Today REGENXBIO announced new data from its ongoing Phase I/II AFFINITY DUCHENNE® trial of RGX-202, an investigational #genetherapy being developed for individuals with #Duchenne. Learn more: parentprojectmd.org/regenxbio-shar…

As the school year comes to a close, we are all looking forward to a fun-filled summer! Whether you’re looking for outdoor adventures, creative indoor projects, or everything in between, there’s something for everyone! parentprojectmd.org/inclusive-summ…

Last week Dyne Therapeutics joined us for a webinar on the DELIVER study of DYNE-251. Dyne provided the latest updates on the Phase 1/2 global DELIVER study of its investigational therapy for individuals living with #Duchenne who are amenable to exon 51 skipping. parentprojectmd.org/watch-dyne-the…

We're excited to share the expansion of our CDCC Program with the certification of the Neuromuscular Program at Children's Hospital! CHOP also becomes the first to receive our Clinical Research Designation recognizing excellence in clinical care & research. parentprojectmd.org/ppmd-announces…