Holly Peay's Blog (23)

Early diagnosis makes a difference

Parents of children with Duchenne and Becker muscular dystrophy often experience a diagnostic odyssey that is too long and too emotionally difficult. Parents who have shared the story of their diagnoses told us:

“My son’s pediatrician blew off my concerns and told me some children just develop slower than others.  During the following months I repeatedly…

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Added by Holly Peay on September 13, 2012 at 1:12pm — No Comments

Expectations for Clinical Trials

Over the past few years I have talked to a lot of parents, individuals with Duchenne, and clinicians about clinical trials. This probably won’t be a surprise to you: I often hear how desperation and a feeling of running out of time affect how people think and feel about clinical trials.      

 

Many bioethicists are worried…

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Added by Holly Peay on August 9, 2012 at 11:47am — No Comments

Critical Care Resources for Your Family

PPMD continues to bring you the most up-to-date care resources, so that you and your family and everyone who helps care for your son, has the information they need at their fingertips. Here are some recent updates we wanted you to be aware of:

 

  • The Psychology of Duchenne Muscular Dystrophy

    Jos Hendriksen, Ph.D. and a team of behavior experts…
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Added by Holly Peay on February 13, 2012 at 11:00am — No Comments

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