PPMD Community

February 2018 Blog Posts (8)


Staff
End Duchenne Tour Recap: Morristown, NJ

PPMD kicked off the 2018 End Duchenne Tour with a stop in our very own backyard - Goryeb Children's Hospital in Morristown, New Jersey! PPMD was extremely grateful to partner…

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Added by Ryan Fischer on February 15, 2018 at 2:30pm — No Comments


Staff
[Webinar Recording & FAQs] Positive Data from Summit's PhaseOUT DMD Ezutromid Clinical Trial

Last week, Parent Project Muscular Dystrophy and Action Duchenne hosted a webinar update on the recent report that Summit has announced…

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Added by PPMD on February 15, 2018 at 11:30am — No Comments


Staff
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…

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Added by PPMD on February 15, 2018 at 10:30am — No Comments


Staff
Catabasis Reports Edasalonexent Preserved Muscle Function & Substantially Slowed Duchenne Progression

Catabasis Pharmaceuticals reported new positive efficacy and safety results showing preservation of muscle function and sustained disease-modifying effects in boys with Duchene in the MoveDMD trial open-label extension following 48 and 60 weeks of treatment with edasalonexent. Consistent improvements in all assessments of muscle function were observed after more than a year of oral 100 mg/kg/day edasalonexent treatment compared to the rates of change in the…

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Added by PPMD on February 13, 2018 at 9:00am — No Comments


Staff
Action Alert! Americans with Disabilities Act (ADA) in Jeopardy

The Americans with Disabilities Act (ADA) is in jeopardy and a current bill in the House of Representatives threatens to undermine the protections of the ADA.



We need all members of our Duchenne community to contact your…

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Added by Annie Kennedy on February 12, 2018 at 9:54am — No Comments


Staff
Action Alert! Americans with Disabilities Act (ADA) in Jeopardy

The Americans with Disabilities Act (ADA) is in jeopardy and a current bill in the House of Representatives threatens to undermine the protections of the ADA.



We need all members of our Duchenne community to contact your…

Continue

Added by Annie Kennedy on February 12, 2018 at 9:30am — No Comments


Staff
From our Hearts to Yours — Updates in Duchenne Cardiac Care Guidelines

Care for the heart has long been a priority for PPMD. Over the past several years, PPMD’s Cardiac Initiative has given rise to:



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Added by Kathi Kinnett on February 7, 2018 at 1:31pm — No Comments


Staff
Santhera Launches U.S. Expanded Access Program with Idebenone for People with Duchenne

Santhera Pharmaceuticals announced the launch of a U.S. Expanded Access Program (EAP) referred to as BreatheDMD with idebenone for people with Duchenne. Through the BreatheDMD program, eligible patients in the U.S. with Duchenne who are 10 years and older and in respiratory function decline, can obtain access to…

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Added by PPMD on February 6, 2018 at 8:00am — No Comments

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