April 19, 2018

PPMD & NIH to Host “Contractures in Duchenne and Other Neuromuscular Conditions”

PPMD and NIH are convening a group of more than 60 researchers, post-docs, neurologists, surgeons, industry partners, physiatrists, and physical therapists on April 19-20, 2018, who have experience and expertise in the development, prevention, and…

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April 16, 2018

70 Members of Congress Send Letter of Strong Support for Duchenne Priorities for Next Year’s Budget

We are pleased to report our final numbers for the FY19 letters. In total, 19 Senators signed onto the Senate FY19 letter, joining 51 members of the House. That makes a solid 70 members of Congress (House…

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April 11, 2018

Why is Bone Health Important?

Just like a house needs a stable frame, your body needs a stable skeleton. Bone health is important for anyone living with Duchenne, whether walking (ambulatory) or those no longer able to walk without the…

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March 28, 2018

End Duchenne Tour Recap: Grand Rapids, MI

PPMD was excited to head to the Midwest for the second stop on the 2018 End Duchenne Tour. The event took place at Western Michigan University in Grand Rapids, Michigan, in partnership with Team Joseph, Little…

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March 27, 2018

Center Directors Publish Collective Statement Regarding Patient Access to Approved Therapies

PPMD is proud to announce the publication of a collective statement regarding patient access to approved therapies from the center directors of our Certified Duchenne Care Centers. There are many ongoing treatment trials for Duchenne and…

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March 26, 2018

[WEBINAR] What is a Master Protocol?

PPMD fights to end Duchenne for every single family. As part of our mission, we believe that we must continually work to identify and explore innovative opportunities that may accelerate the drug development and clinical…

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March 21, 2018

Race Athlete Spotlight: Emma & Alexis Broggi

Meet Emma Broggi, 17 years old and Alexis Broggi, 14 years old: Why did you choose to join the Race to End Duchenne team? Soon after we met Danny and his family, our family chose…

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March 13, 2018

Duchenne Pulmonary Awareness Video Series

Pulmonary management in Duchenne (all of the care involved with breathing and coughing) can be confusing and difficult to understand. There are many terms, abbreviations, and procedures that all sound very complicated. PPMD – with support from…

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March 8, 2018

PPMD’s Historic Compass Meeting

There are hardly words to capture the impact our unified community had on Monday. We had traveled from all over the nation to convene with federal policymakers, industry partners, and payers for the Duchenne Patient-Focused Compass…

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February 15, 2018

FDA Publishes Finalized Duchenne Guidance for Drug Development

Today is a historic moment for the Duchenne community, as moments ago the FDA published the finalized “Duchenne Muscular Dystrophy and Related Dystrophinopathies: Developing Drugs for Treatment” Guidance for Industry (click here to access), along with four other guidances….

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