Well it has been a hell of a week. I have talked to two of my sons physical therapists. They have both in formed me that his hips and legs pretty much lost all muscle. He is losing upper body too, he has lost his grip, his shoulders, his elbows. And he is losing his back and stomach. So now i am wondering what comes next. He already has heart problems so what do we do. Im scared that it is going to fast for him because it just started speeding up like this any suggestions.
Added by danielle on March 14, 2014 at 8:56pm — No Comments
Though the MD-CARE Act remains our top priority, we need to ensure that agencies receive adequate funding and direction for the programs that are so critical to our community. One tool we use to ensure that funding and direction is our Congressional funding letter. It has made a tremendous impact on appropriations.
To illustrate this point, let’s look at how our yearly funding letters have impacted the NIH’s…Continue
I have had the great pleasure of representing Parent Project Muscular Dystrophy and the Duchenne community at the Muscular Dystrophy Coordinating Committee (MDCC). Members of the MDCC are involved in muscular dystrophy research, including federal agencies and advocacy organizations. Last August, I spoke at a MDCC meeting. The meeting was seven months after my son Matthew died from a cardiac arrhythmia. His passing made me realize the management of cardiac health is complex and needs to…Continue
Added by Brian Denger on March 11, 2014 at 6:00pm — No Comments
How is it our sons can seem like this doesnt bother them? But then one day you watch him and you see everything he cant do but you sit and think its like this every day and hes fine. But this day he cries. I watched my son at a birthday party today, the other kids were playing with water balloons and a pinata. He tried playing both with them he was to weak to hit any candy out of the pinata and then when one of the bigger kids busted it all the other kids got the candy and my son sat under a…Continue
Added by PPMD on March 7, 2014 at 2:30pm — No Comments
As a mother who lost two sons to this dreadful disease, I am driven to find every way possible to help bring new therapies to families, to end Duchenne. PPMD supports and agrees with all parents urging the agency to accept Sarepta’s submission for the approval of eteplirsen, as well as any other therapy that shows similar promise. The voices of patients and caregivers are critical to the process of drug development and we believe the message is being heard.
Added by Pat Furlong on March 7, 2014 at 9:30am — No Comments
We all know that the heart is a muscle too! Most people and parents living with Duchenne feel that care for the heart, as defined by the Care Considerations, is not as current or as aggressive as they would like. In 2009, when the Care Considerations were published, cardiac care was very…Continue
Added by Kathi Kinnett on March 5, 2014 at 1:30pm — No Comments
It's been just one week since the 2014 Advocacy Conference, and we have already upped the number of cosponsors for the MD-CARE Act! We are now at 85 in the House & 21 in the Senate. Please take a moment to reach out to our newest cosponsors listed below thank them.
This community is…Continue
Dear DMD community, I would like to have Health Canada make its own decision, independent of the FDA, about Drisapersen and Eteplirsen and any upcoming duchenne drugs. We need all countries taking action on this, so let it be known that we want these drugs NOW. Please write to Health Canada, Rona Ambrose, our federal health minister, write to your provincial health ministers, ask your physicians to do it too, write or phone: