Posted on December 12, 2017 at 9:00am 0 Comments 0 Favorites
We’ve entered a new chapter for families with Duchenne, and 2017 has been a year of incredible promise.
Yes, we’ve faced some setbacks, but we’ve also seen incredible successes, like recent breakthroughs in gene therapy. It’s essential that we keep…
Posted on November 30, 2017 at 6:30pm 0 Comments 0 Favorites
Throughout the history of Duchenne, there have been moments that we recognize as inflection points, times when we saw a significant shift in the fight to end Duchenne, when the…
ContinuePosted on October 24, 2017 at 3:00pm 0 Comments 0 Favorites
Lengthy trials with variable results, based on endpoints such as the 6-minute walk test that can limit trial enrollment to ambulant individuals with Duchenne – this is today’s reality for clinical trials in this disease.
But progress is being made and PPMD is proud of our role in changing the clinical trial process. Last week,…
ContinuePosted on October 11, 2017 at 12:30pm 2 Comments 0 Favorites
On September 28 and 29, I had the privilege of attending an in-person Wellstone Center meeting that Dr. Eric Olson and his Wellstone team at UT Southwestern Medical Center hosted in Dallas, TX. The breadth and depth of what the Wellstone Centers have worked on over the years was apparent. I was struck by the number of therapies in the clinic…
ContinueDear, Abby Bronson! I prepared a project to help children in Ukraine, I sent it to our Ministry. I constantly learn something about muscular dystrophy from your sites. Finally, the Ukrainian neuroscientists have interested in my materials. I have seen that I should help not only my family but also to other families in Ukraine. We must see how parents live in USA.I invite you and somefamily to us in Ukraine. Our family is ready to welcome you and we want very strong to stay to summer camp in USA with my son. He is 9,5. Help us. How I can do it? In Ukraine isn`t camp for Muscular Dystrophy. I'm afraid to lose time.
Hello! My name is Margarita, I live in Ukraine, Kirovograd
About my family:
. I have a son, who is ill with Duchenne. He is now 9 years old. Doctors diagnosed the illness at the age of 6.5 . In Ukraine, no one treats such children. Therefore, we are forced to travel to Israel each year to see a neurologist. There we learned how to swim in the pool, ride a horse, do special exercises (such as stretching) every day. For 2 years we have been able to stop the disease. But I would like to communicate with the American parents and doctors who probably know more about new medicines or methods for treating this condition.
I want to participate in different Parents’ Projects for Muscular Dystrophy online. There may already be drugs that can cure my son. Please help us, because we are lonely here with our problem.
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