At yesterday’s Duchenne Policy Forum, Vice President of Research Sharon Hesterlee, PhD, tweeted throughout the day, reporting to the community what transpired during this historic meeting. We have compiled these tweets and fit them into the agenda to give you a recap. (Please note that these notes may…Continue
12/12/13 8:30 AM
There are days when the stars align just right. Seems to me, December 12, 2013 was one of those days.
Eighteen members of the FDA arrived and were seated around a U-shaped table near the front of the Maryland Room at the DoubleTree Hotel in Silver Springs, MD. We…Continue
Why the December FDA Policy Forum is important to every Duchenne family – from rare mutations to Exon 51
Guest post Lance Hester. Lance is a PPMD Board Member and lives in Gig Harbor, Washington, with his wife, Janelle, and their two boys, Brayden and Micah. Micah was diagnosed with Duchenne in 2005.…Continue
Added by PPMD on December 9, 2013 at 1:00pm — No Comments
Due to overwhelming interest in PPMD’s Duchenne Policy Forum on December 12 in Silver Springs, MD, registration is now closed. We are at capacity and unfortunately there will be no onsite registration due to space restrictions.
Added by Ryan Fischer on December 6, 2013 at 11:30am — No Comments
For our families, Duchenne research can’t move fast enough.
There is no lack of ideas or interest—7 public companies and more than 15 biotechs are focused on finding treatments for Duchenne. But promise is only one part of the story. We need to actually change the landscape and bring drugs to market faster.
You can help make it happen with one simple action:…Continue
Added by Pat Furlong on December 4, 2013 at 11:00am — No Comments