September 26, 2024

PPMD Joins Duchenne Parent Project aps Respiratory International Professional Care Meeting

Parent Project Muscular Dystrophy (PPMD) is pleased to announce our participation in the upcoming “Respiratory Assessment and Management of Duchenne Muscular Dystrophy: Current Standards and Future Directions” meeting, which will take place in Rome, Italy,…

Learn More

September 18, 2024

PPMD & Global Patient Advocacy Groups Award BIND Project $113,000 to Further Brain Involvement Research

PPMD is thrilled to announce that we have collaborated with a number of patient organizations around the globe to provide Leiden University Medical Center (LUMC), together with the Duchenne Data Foundation (DDF), funding to further…

Learn More

September 17, 2024

Navigating Access & Resources

Navigating Access & Resources Navigating insurance access for medical care such as approved therapies or equipment can be daunting. Parents, patients, and healthcare providers spend hours putting together documents and speaking on the phone trying…

Learn More

September 12, 2024

Watch the Recording: Advocating for A Successful School Year

Recently, PPMD’s Alexis Hazlett was joined by panelists Jodi Krause (Colorado Children’s Hospital), Jill Castle, and Patrick Moeschen to discuss advocating for your child throughout the school year. The speakers dove into the differences between…

Learn More

September 9, 2024

Setting Up A Successful School Year

Setting Up A Successful School Year PPMD is here to make sure that families within the Duchenne and Becker community have the necessary tools to advocate for their child not only in medical settings, but…

Learn More

September 5, 2024

Myology Course Educates and Advances Next Generation of Neuromuscular Physicians and Scientists

PPMD is dedicated to fighting for every future as we strive to end Duchenne. Since 2011, PPMD has been a proud supporter of the Myology Course, presented by Nationwide Children’s Hospital (NCH) and The Ohio…

Learn More

August 23, 2024

Duchenne Added to Massachusetts Newborn Screening Panel

PPMD is excited to announce another significant milestone: Massachusetts has officially approved the addition of Duchenne to the state’s newborn screening panel! The addition of Duchenne to the Commonwealth’s newborn screen panel was included as…

Learn More

August 13, 2024

Finding Support to Manage Behaviors in Duchenne and Becker

Research has shown that dystrophin is usually present in the brain as well as in the muscles. Scientists believe that when dystrophin is missing or partially functional, like in Duchenne and Becker, brain neurons may…

Learn More

August 12, 2024

PPMD Urges FDA to Conduct a Full Review of Ataluren (Translarna) Following Resubmission of NDA

PTC Therapeutics has shared that it has resubmitted its New Drug Application (NDA) to the FDA for review and potential approval of ataluren (Translarna). Ataluren is an oral small molecule treatment that allows for stop-codon…

Learn More

August 6, 2024

Clinical Trials & Outcome Measures in Duchenne

Clinical trials and research studies are vitally important to improving health and quality of life for people with Duchenne and Becker. Research is always advancing and evolving, and outcome measures fall into this category, as…

Learn More