March 9, 2020

PPMD Hosts Leaders from NIH and DOD to Discuss Duchenne Community’s Work with Federal Agencies

With PPMD’s 2020 Advocacy Conference well underway, attendees participated in a special breakfast session earlier today reflecting on the progress our community has made since the first National Institutes of Health (NIH) workshop on Duchenne…

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March 6, 2020

PPMD Applauds Reintroduction of Bipartisan Legislation to Enhance Role of the Patient in Drug Development

Parent Project Muscular Dystrophy (PPMD) applauds this week’s reintroduction of legislation called the BENEFIT Act, bipartisan legislation that will strengthen current law requiring the Food and Drug Administration consider the voice of patients and caregivers…

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March 5, 2020

Update on PPMD’s 2020 Advocacy Conference

As many of you know, PPMD and a number of families from the Duchenne community plan to descend upon our Nation’s Capital this weekend to help make sure that Duchenne research is included in the…

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February 3, 2020

Register Today for PPMD’s 2020 Advocacy Conference!

Registration for the PPMD Advocacy Conference is live! Join us March 8-10, 2020 in Washington, DC to advocate for Duchenne directly with your Members of Congress. Because of our community’s presence in Washington for the…

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December 23, 2019

Advocacy Matters! Duchenne Community Requests Included in 2020 Federal Budget

Bipartisan agreement reached on funding bill includes Duchenne specific funding levels and report language advocated for by PPMD advocates! Who says Congress can’t agree on anything? After 147 in-person meetings in Washington DC by Duchenne…

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December 12, 2019

FDA Authorizes First Test to Aid in Newborn Screening for Duchenne

Today, the FDA authorized the marketing of the first test to aid in newborn screening for Duchenne. As you know, PPMD has been leading the effort for newborn screening in Duchenne. In October, the first…

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November 8, 2019

Join the 2020 PPMD Adult Advisory Committee! Application Deadline: Friday, November 15

Been looking for a way to engage with the community a bit more? Have personal experience that you’d like to see be better reflected in national policy and program efforts? Interested in serving as a…

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October 21, 2019

Transitioning to a New Role – While Keeping My Arms Wrapped Around Duchenne

Over the last few weeks, I have spent many hours reflecting on just how privileged I have been to share this journey with so many of you, and have spent hours recounting highlights among these…

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October 11, 2019

Calling All Adults with Duchenne & Becker MD: Join the 2020 PPMD Adult Advisory Committee!

Been looking for a way to engage with the community a bit more? Have personal experience that you’d like to see be better reflected in national policy and program efforts? Interested in serving as a…

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October 1, 2019

First Baby Tested Via Parent Project Muscular Dystrophy’s Newborn Screening Pilot

Today, our community’s collective efforts have led to an incredible milestone for PPMD’s Duchenne Newborn Screening Pilot in New York State. Today, the first babies are being SCREENED for Duchenne. This is a significant milestone…

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