During my years of clinical practice, I was repeatedly asked, “Is there something that I can feed my child to help slow down, or stop, the effects of Duchenne?” The absolute answer is – we don’t know. But a new article out this week has endeavored to address this question.
Engineering and Duchenne-not two words you typically hear in the same breath. I guess I should back up and explain. My name is Hannah Ware, I am the sister of Seph Ware, who was diagnosed with DMD in October of 2005. I am a student at the Colorado School of Mines in an engineering program. Still wondering what that has to do with Duchenne? Each semester, the students at Mines are assigned a design project. This semester, the students have been asked to design a…Continue
DuchenneConnect was recently awarded close to $1 million dollars in funding from PCORI, the Patient-Centered Outcomes Research Institute!
DuchenneConnect will be one of 29 members of PCORnet, the National Patient-Centered Clinical Research Network. The goal of PCORnet is to create a large, highly representative, national network for conducting clinical research. This is especially…Continue
Added by Holly Peay on February 19, 2014 at 12:30pm — No Comments
Response of Muscular Dystrophy to Nutritional Supplementation.
In January 2003, at 2½ years of age, my grandson started to show signs that were
cause for concern. He was flat-footed, often losing his balance and falling, constipated
and displayed an overall lack of energy. At family gatherings, most of us noticed that the
boy stayed at his mother‟s side and didn‟t join in playing with his cousins. He often cried,
pleading with her to…
Added by Anuj Sheth on February 14, 2014 at 6:13pm — No Comments
Guest post by Joanna Johnson. Joanna is mom to Elliott and Henry, both living with Duchenne muscular dystrophy.
Added by PPMD on February 13, 2014 at 10:17pm — No Comments
Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD and mom to Hazel, age 8, and Rain, age 6. Rain has Duchenne muscular dystrophy. …Continue
Sarepta’s 120 week stability data on both the six minute walk test, as well as, pulmonary function is good news for the Duchenne community. For the 12 young men in the study, we are thrilled. And for those waiting, we see hope on the horizon. We congratulate Sarepta for their continued commitment to people with Duchenne and we hope the FDA…Continue
Added by Pat Furlong on February 6, 2014 at 1:30pm — No Comments