Our Strategy & Impact

In the 20+ years Parent Project Muscular Dystrophy has been around, the average lifespan of people with Duchenne has increased from late teens/early-20s to mid-20s/early-30s. We’ve seen the greatest advancements in the fight to end Duchenne around standards of care, resulting in greatly improved quantity and quality of life.

Because of PPMD’s push to advance care, people with Duchenne are living longer, stronger, happier, more productive lives. Our community members hold important jobs, impact policies in Washington, get married and raise families – things we would not have thought possible even 10 years ago.

Our Strategy

  • PPMD strives to ensure that people living with Duchenne are living longer, stronger lives, by helping them access expert healthcare providers, a comprehensive team of sub-specialists, and cutting edge treatments.
  • In partnership with the CDC, PPMD advocates for and participates in the development of standards of care for Duchenne. These guidelines outline the accepted treatments and therapies known to reduce Duchenne symptoms and improve quality of life. These guidelines are also included in the “Imperatives for DUCHENNE MD,” a one-page snapshot of recommended Duchenne care.
  • We help families access Duchenne care and services via the PPMD Certified Duchenne Care Center Program. Centers that qualify for PPMD’s certification must meet and maintain the highest standards—complying with CDC care guidelines and applying new, evidence-based knowledge and care as it emerges.
  • PPMD connects the Duchenne community through The Duchenne Registry (previously known as DuchenneConnect)—the only registry connecting Duchenne and Becker patients and families with clinical trials, care, and research. Many of these trials offer hope through treatments that improve function, prognosis, and quality of life.
  • Decode Duchenne provides free genetic testing and counseling to people with Duchenne or Becker muscular dystrophy who otherwise could not afford genetic testing. Decode Duchenne is administered by The Duchenne Registry, a program of Parent Project Muscular Dystrophy, and is supported by Sarepta Therapeutics and PTC Therapeutics.
  • PPMD helps people with Duchenne and their families understand the value and importance of standardized optimal care. We advocate for improvements in care and access for all families regardless of geography or socioeconomic status.

 

Our Impact

We take our leadership role in the Duchenne community very seriously and we know that people turn to us first when they have questions about care. Over the last several years, PPMD has worked diligently with experts in our community to ensure that our website is up-to-date, reflecting the most recent advances and best practices in providing optimal care.

  • We’ve seen the greatest advancements in the fight to end Duchenne around standards of care that significantly improve quality of life.  PPMD has been at the forefront of those advancements.
  • We know that in urgent situations, families need important and accurate information at their fingertips. Not only does our website contain the critical information you need, but we introduced and Emergency Care Card and the first Duchenne-specific mobile app in the U.S. so you always have information you need when and where you need it.
  • Since our founding in 1994, the average lifespan of people with Duchenne has increased from late teens/early-20s to mid-20s /early-30s. This incredible leap is not because of any drug interventions or treatments. It is because PPMD has pushed to advance care.
  • The Care Considerations, or standards of care, provide a framework that practitioners across the country use to identify and manage the symptoms of Duchenne. The Imperative for DUCHENNE MD provide a one-page snapshot of those recommended elements of care.
  • We have certified more than 18 care centers across the country and have plans to increase that number and include international centers, making comprehensive Duchenne care and services even more accessible for all families living with Duchenne.
  • Decode Duchenne has provided over 650 patients with free genetic testing, interpretation of results, and counseling.