Parent Project Muscular Dystrophy

10/14/2026

💻 Tune in today at 1:00 PM ET to hear from Dyne Therapeutics about the ongoing FORZETTO study of seleciment rostudirsen (DYNE-251)! Register now and submit your questions for the Dyne team in advance: https://www.parentprojectmd.org/events/community-webinar-dyne-therapeutics-forzetto-explained-understanding-the-phase-3-trial-of-zeleciment-rostudirsen-dyne-251-for-duchenne/

Please join Parent Project Muscular Dystrophy and Dyne Therapeutics for a community webinar on Wednesday, October 14 at 1 PM ET. Dyne Therapeutics will present the design of ongoing FORZETTO study on z-rostudirsen (also known...

10/13/2026

👟 ❤️ Chicago, you showed up for Duchenne and Becker!

What a weekend! A huge thank you to every Race to End Duchenne runner, cheer squad, volunteer, and supporter who came out for the Chicago Marathon. Every mile run, every sign held high, and every dollar raised makes a difference for the and community.

❗ Applications are now OPEN to join the Race to End Duchenne team for the 2027 Chicago Marathon! Learn more: https://form.jotform.com/Parent_Project/rted-2027-chicago-marathon?utm_source=social

Want to be part of the Race to End Duchenne team? Learn more and get involved: https://www.parentprojectmd.org/get-involved/race-to-end-duchenne/

10/13/2026

Did you tune in for our community webinar with Capricor Therapeutics, Inc. last week? Watch the recording for an update on new 24-month HOPE-3 open-label extension (OLE) data for .

Capricor shares data recently presented at the World Muscle Society Annual Meeting and included in the company's BLA submission to the FDA, and answers questions from the community.

Watch the recording to catch up on the latest updates:

Capricor Therapeutics joined PPMD for a community webinar on October 7, 2026, to share details about new 24-month data from the HOPE-3 open-label extension

10/09/2026

Join us this upcoming Wednesday, October 14 at 1:00 PM ET for a community webinar with Dyne Therapeutics. Dyne will present the design of the ongoing FORZETTO study on z-rostudirsen (also known as DYNE-251) for individuals living with amenable to exon 51 skipping.

Register today and submit questions in advance:

Please join Parent Project Muscular Dystrophy and Dyne Therapeutics for a community webinar on Wednesday, October 14 at 1 PM ET. Dyne Therapeutics will present the design of ongoing FORZETTO study on z-rostudirsen (also known...

10/08/2026

Last week, the 31st annual World Muscle Society Congress brought together researchers, clinicians, and advocates from around the world to share new knowledge and advance the future of neuromuscular disease.

PPMD is proud to support and contribute to that work, and it’s now easier than ever to explore it. We're excited to introduce PPMD’s new Publications page, where you can find published PPMD-authored and or -sponsored research, abstracts, posters, meeting reports, and more, all in one place.

Explore the work PPMD is doing to advance research and care for people and families living with and . Check out PPMD’s Publications: https://www.parentprojectmd.org/publications/

10/05/2026

🤧 As school gets underway and winter approaches, respiratory infections like influenza (flu), RSV, and COVID-19 are more likely to spread. For individuals with or , weakened respiratory muscles can make it harder to fight off infections and may increase the risk of serious complications.

Learn more about preventing respiratory illnesses, when to seek medical care, and how to manage your child’s pulmonary care if your family does get sick this season:

As school gets underway and winter approaches, respiratory viruses like influenza (flu), RSV, and COVID-19 are more likely to spread. This year, and every year, it’s important to protect yourself, your children, and your family...

10/05/2026

During the WMS annual Congress this past week, Capricor Therapeutics, Inc. presented new 24-month data from the ongoing HOPE-3 open-label extension (OLE) study of Deramiocel, which has been submitted to the FDA as part of the recent major amendment to the Deramiocel BLA.

💻 Tune in this Wednesday, October 7 at 1:00 PM ET for a community webinar with Capricor as we dive into an overview of this new data and answer questions from the community. Register and submit questions in advance: https://www.parentprojectmd.org/events/community-webinar-capricor-therapeutics-overview-of-new-hope-3-2-year-ole-data/

https://www.parentprojectmd.org/catch-up-on-the-31st-congress-of-the-world-muscle-society/

10/02/2026

As the World Muscle Society annual Congress brings the international neuromuscular community together this week to learn about the latest advances in research, PPMD is continuing the conversation with Capricor Therapeutics, Inc. on new Deramiocel data.

Join PPMD and Capricor for a community webinar on Wednesday, October 7, 2026, at 1:00 PM ET to learn more about new 24-month data from the HOPE-3 open-label extension (OLE) study of Deramiocel for the treatment of .

Learn more, register today, and submit questions in advance: https://www.parentprojectmd.org/events/community-webinar-capricor-therapeutics-overview-of-new-hope-3-2-year-ole-data/

As the World Muscle Society Annual Meeting brings the international neuromuscular community together this week to learn about the latest advances in research, PPMD is continuing the conversation with Capricor on new Deramiocel data. Join...

10/01/2026

❤️ 🩺 Heart issues don’t just affect some people with Duchenne; they affect ALL people with Duchenne. That’s why PPMD is committed to advancing cardiac research. 🔬

Join us for a webinar on Thursday, October 8, 2026 at 1:00 PM ET featuring Dr. Jon Soslow, Dr. Ramona Belfiore-Oshan, and Dr. Chet Villa for a conversation about two newly funded U.S. Department of Defense research projects in the cardiac space.

Together, we will discuss what these projects hope to learn, how these projects build on progress in Duchenne cardiac research and intersect to advance our understanding of cardiac disease and its progression, and how better data and meaningful outcome measures could support clinical care, clinical trial development, and regulatory decision-making. The conversation will also highlight the important role of continued advocacy and investment in advancing cardiac research.

💻 Register today and submit questions in advance:

09/30/2026

Each year, the World Muscle Society (WMS) Annual Congress brings together the best minds in neuromuscular research, clinical care, patient advocacy, and industry. The meeting offers a dynamic platform for sharing new data, fostering collaborations, and advancing the science behind therapies for diseases like and .

PPMD will be sharing updates from WMS, going on now in Hiroshima, Japan, in the coming days, starting with an update from Sarepta Therapeutics with safety and functional data for ELEVIDYS in older ambulatory patients with Duchenne. Learn more and stay tuned for more updates from WMS: https://www.parentprojectmd.org/catch-up-on-the-31st-congress-of-the-world-muscle-society/