A conga line of people snaked through shaded outdoor tables as the setting Florida sun warmed their faces. For all the conga lines one can imagine, this one was slightly different — people in wheelchairs were also grooving to the music. They had Duchenne muscular dystrophy (DMD), and they…
Motherhood was not something I was always sure I wanted. The idea of motherhood scared me. I didn’t think I had what it took. When I think of the word mother, I think of love — and I feared I didn’t have enough to give. That changed the moment I…
Treatment with glucocorticoids and heart medicines are key factors in determining the prognosis of Duchenne muscular dystrophy (DMD), according to a study. Results also highlighted genetics as an important factor affecting DMD progression. The paper, “Prognostic indicators of disease progression in Duchenne muscular dystrophy: A literature review…
Despite broad initiatives seeking improvements, the time it takes an individual with Duchenne muscular dystrophy (DMD) to get a correct diagnosis has remained largely unchanged over the past three decades, a study reports. It still takes more than two years, on average, from the time symptoms are first noticed…
New places, new people, new things: They’re exciting! As a parent, I encourage my children to try new things, step outside their comfort zones, and see what the world has to offer. There is no difference in how I parent my children with Duchenne muscular dystrophy (DMD) and my…
Treatment with the breast cancer medicine tamoxifen improved the functionality and survival of heart muscle cells in a cellular model of Duchenne muscular dystrophy (DMD), a study reports. The study, “Tamoxifen treatment ameliorates contractile dysfunction of Duchenne muscular dystrophy stem cell-derived cardiomyocytes on bioengineered substrates,” was published…
The FSHD Society has joined forces with the Critical Path Institute (C-Path) to facilitate the collection of data from people with facioscapulohumeral muscular dystrophy (FSHD) who were given a placebo in previous clinical trials. Provided by sponsors of FSHD trials, the data will be integrated into C-Path’s…
The last time I traveled on my own without my parents was last May, when my friends and I went to Hawaii. While my parents did come with us, they kept to the hotel room and let us explore. Being away from the comfort of home made me realize I…
I drive a massive, commercial-size, accessible, 12-passenger Dodge Promaster van with a high roof. And I love it for many reasons. Our van was never — and is not now — my dream car. But just like Duchenne muscular dystrophy (DMD), it is something I have learned to…
New data from a Phase 1/2 clinical trial of an exon-skipping gene therapy suggest it may help preserve muscle function if delivered early on to Duchenne muscular dystrophy (DMD) patients with exon duplications. This is the first time a clinical trial has shown production of full-length dystrophin, the protein…
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