My son, Justin Paul Monastesse, was a gift and he lived with Duchenne for more than 25 years. Justin always had a great time even though it took 2 1/2 hours to get him up and ready because of the ventilator and feeding tube. He was off to teach computer classes at his old high […]
  Dear Patient Group Representative, On the 20th of September this year, we shared the results about our Phase III study (DMD114044) of drisapersen in boys with Duchenne Muscular Dystrophy – we did not see a statistically significant difference in 6 Minute Walk Distance, the primary endpoint,  between the boys who received drisapersen and those […]
  Our good friend Tyler Armstrong, 9, of Yorba Linda, Calif., will attempt a record breaking climb of Mt. Aconcagua in Argentina, the highest peak (22,837 ft.) in both the Western and Southern Hemispheres, to raise awareness and fund research to benefit CureDuchenne. Tyler is a hero and inspiration to Duchenne families around the world. […]
We are delighted that Sarah Burgess, a talented singer-songwriter and contestant on the sixth season of American idol, has written a song to benefit CureDuchenne. Sarah’s brother Jacob lives with Duchenne and was inspired to write the song in honor of her brother and all boys who live with Duchenne. The new song is called […]
Click here for the recorded webinar:  https://cc.readytalk.com/cc/playback/Playback.do?id=2lyea5 CureDuchenne has been an early and important funder of exon skipping research for Duchenne.  As we gain visibility to an actual therapeutic with exon skipping, we believe it’s important that all boys afflicted with this disease have access to a drug that will treat their specific mutation. The detection […]
The “U.S. Conference on Rare Diseases & Orphan Products: The New Era in Health Care” hosted by DIA and the National Organization for Rare Disorders (NORD) was held in Bethesda, MD from October 7-9. CureDuchenne provides a summary of the conference below.  Thank you Abby Bronson for attending on behalf of CureDuchenne and sharing your […]
This is a very brief summary of some of the key points from this morning’s webinar hosted by Sarepta and moderated by Chris Garabedian, CEO and Ed Kaye, CMO.  CureDuchenne is proud to have been a supporter in the development of etiplersen and we appreciate this company update. The Duchenne community is keen to help […]
On Tuesday October 15, GSK and Prosensa conducted a conference call for the Duchenne community, especially for members that may not have been at several of the recent meetings where the two companies reviewed data on several of their clinical trials. CureDuchenne provides a recap of the webinar below. GSK reviewed its phase 3 trial […]
Dear Patient Group Representative, GSK and Prosensa will hold a joint webinar on Tuesday 15th October 2013 at 4:00 PM British Summer Time (GMT+0100) for the DMD patient community.   Pre-registration entry for Patient Group Representatives and their members: You will need to register for the conference call using the Pre-registration web site. After registering, you will be […]
Dear Patient Group Representative, GSK and Prosensa will hold a joint webinar on Tuesday 15th October 2013 at 8:00 am Pacific, 11:00 am Eastern for the DMD patient community.   Pre-registration entry for   Patient Group Representatives and their members: You will need to register for   the conference call using the Pre-registration web site. After registering,   […]
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