February 2014 Blog Posts (8)

Nutrition, Energy, and Duchenne

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.

As people living with Duchenne age and grow, their muscles are constantly…


Added by Kathi Kinnett on February 26, 2014 at 12:00pm — 2 Comments

Duchenne and Engineering

PPMD Parents,

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…


Added by Hannah Ware on February 21, 2014 at 5:35pm — 2 Comments

DuchenneConnect Receives $970,000 Award

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…


Added by Holly Peay on February 19, 2014 at 12:30pm — No Comments

Journal of Orthomolecular Medicine Vol. 22, No. 3, 2007


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 7:00pm — 1 Comment

Alternative Healing

Alternative Healing


Added by Anuj Sheth on February 14, 2014 at 6:13pm — No Comments

Parents: Please share your thoughts about clinical trials

Guest post by Joanna Johnson. Joanna is mom to Elliott and Henry, both living with Duchenne muscular dystrophy.

As you may know, PPMD is involved in a study funded by the NINDS to learn about our community’s thoughts about clinical trials. I am on the study leadership team. Being a part of this study has been…


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. Follow Ivy at her blog, Living …


Added by PPMD on February 7, 2014 at 9:00am — 2 Comments

Finally, Some Good News!

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…


Added by Pat Furlong on February 6, 2014 at 1:30pm — No Comments

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