January 2018 Blog Posts (10)


Staff
Summit Therapeutics Shares Interim 24-Week Data from PhaseOut DMD Clinical Trial

Today, Summit announced positive 24-week interim data from PhaseOut DMD, their Phase 2 clinical trial of the utrophin modulator ezutromid.…

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Added by PPMD on January 25, 2018 at 10:00am — No Comments


Staff
Updated Care Consideration Guidelines for Duchenne Published

PPMD is thrilled to announce that after many years in development, the Centers for Disease Control (CDC) has published updated Care Considerations for Duchenne in The Lancet…

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Added by Kathi Kinnett on January 24, 2018 at 10:30am — No Comments


Staff
PPMD's 2018 Advocacy Conference | Schedule of Events

The PPMD Advocacy Conference registration is live! Join us March 4-6 in Washington DC to advocate for Duchenne…

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Added by Ryan Fischer on January 23, 2018 at 4:50pm — No Comments


Staff
Meet the 2018 PPMD Adult Advisory Committee (PAAC)

In January of 2014 we held our inaugural PAAC Leadership Workshop in Washington,DC. The day included engagement with federal policy makers, congressional staff, and research leaders. At the end of the day, a long-time colleague of mine from the FDA who had spent the entire day with us pulled me aside…

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Added by Annie Kennedy on January 17, 2018 at 10:30am — 2 Comments


Staff
First Duchenne Patient Dosed in Microdystrophin Gene Therapy!

(Photo used with permission from family.)



“DMD gene therapy went well. It was started at 1:15 PM and ended at 2:27 PM”    



On Thursday, January 4, I received this message from Dr. Jerry Mendell accompanied by the photo above – Dr. Mendell at…

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Added by Pat Furlong on January 10, 2018 at 10:00am — 3 Comments


Staff
2018 Off to a Strong Start — 'Patient Experience Data’ Section Added to FDA Reviews

Remember that hot June day in 2015 when hundreds of Duchenne community members rallied together at the U.S. Capitol for PPMD’s EndDuchenne rally? That same day, our longtime Congressional champions Senators Roger Wicker (R-MS) and Amy Klobuchar (D-MN) introduced the Patient Focused Impact…

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Added by Annie Kennedy on January 9, 2018 at 3:30pm — No Comments


Staff
PPMD's Certified Duchenne Care Center Program – 2017 Impact & Progress

PPMD's Certified Duchenne Care Center (CDCC) Program was developed to make comprehensive Duchenne care and services, provided in agreement with the…

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Added by Kathi Kinnett on January 8, 2018 at 4:30pm — No Comments


Staff
How You Can Report Serious Drug Side Effects to the FDA

When our children are hurting, we go to our medicine cabinets and take great care to select products that will ease their pain. Reduce the fever. Relieve the ache.



In Duchenne, we know that the products and supplements prescribed often come with side effects. But we carefully weigh…

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Added by Pat Furlong on January 3, 2018 at 12:00pm — No Comments


Staff
We did it! Because of your commitment & courage!



Parent Project Muscular Dystrophy believes in the promise that gene therapy holds for the Duchenne community. And so we set an ambitious fundraising goal for our Gene Therapy Initiative. In fact, $500,000 is our largest fundraising goal ever.



And once…

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Added by PPMD on January 3, 2018 at 9:30am — No Comments

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