HiMy son is 10 years old with Duchenne . He has learning disability as well. He has a very short statute.I am in a very uneasy situation when strangers ask about his grade.When I say he is in 5th grade, they have a look of astonishment on their face,Don't want to gain sympathy by Saying that he is in special ed .Can you guys give me any suggestions, to get out of such situations?Thank youSee More
"We need to encourage drug companies to continue extension studies beyond 48 weeks. I believe the DMD community must reexamine short 48 week clinical trials. We are starting to see a pattern of failures here.
Date: Saturday, April 16, 2016 Time: 9:00 AM race time (8:00 AM registration opens) Amenities : Technical T-shirt guaranteed for paid pre-registration by April 4th and available while supplies last on race day. Door Prizes and Raffle Prizes as well as refreshments available. Awards for overall age group winners and all kids dash participants. Family Fun Day events ongoing including kids crafts, games, clown and face painting. Location: Charles F. Patton Middle School, Kennett Square, PA …See More
My son is 6 yrs old. We are not on steroids yet also. We are waiting for the VBP-15 trial to open up. It looks like it will be around March from my understanding.
We are now considering the CAT-1004 trial. I am…"
Lilly has now completed one of the largest clinical trials in Duchenne (330 patients) with disappointing results. Today the company reports that their Phase 3 study of tadalafil failed to provide evidence for efficacy in slowing decline in walking ability in boys with Duchenne. Subsequently, the company has made the decision to discontinue the open-label extension. The full update to the community is below. Sadly, this is one more blow for this community. We are deeply grateful to all of the…See More
We are not a team because we work together. We are a team because we respect, trust, and care for each other. – Vala Afshar I am the first person to admit that I don’t know much about a lot of different things. But I do know talent when I see it. And I could not be more proud of the team of passionate, dedicated leaders I have…See More