PPMD Community

January 2018 Blog Posts (6)


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 — 1 Comment


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 — 2 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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