A new drug to build muscle?

Individuals with PWS have motor difficulties throughout life, with low muscle tone and decreased muscle mass.

New Resource for Understanding Autism

Individuals with PWS struggle with a variety of behavioral issues and have an increased incidence of autism compared to the general population and to most other developmental disabilities.  Even in those with PWS who don't have a diagnosis of autism, many behavioral similarities can be found.

Times article on Fragile X clinical trial

There’s a very nice article in the New York Times today [Promise Seen in Drug for Retardation Syndrome] about a human clinical trial testing a drug to improve behavior in those with Fragile X syndrome (FXS), a genetic disorder associated with intellectual disability and behavior problems, among other issues.  The article traces the long path that led to the development of drugs for FXS.   The results of the clinical trial are not yet published and larger studies will

A Preliminary Analysis of the Phenomenology of Skin-Picking in Youth with PWS

Below is a special guest blog from Jessica Morgan, a graduate student working with Dr. Eric Storch at the University of South Florida.  Their group has an interest in understanding skin picking (and other obsessive/compulsive behaviors) in PWS so that they can help develop more effective ways to decrease the behavior.  Many thanks to Jessica for summarizing their study:

What's for dinner? Mandometer anyone?

So, here's a different approach.  A new study looks at the use of a computerized device in helping to modify eating behavior in typically developing obese adolescents.  Treatment of childhood obesity by retraining eating behaviour: randomized controlled trial examines the use of a Mandometer, which provides real time feedback during meals.  Originally developed for people eating disorders such as anorexia, this

Long term safety and benefits of growth hormone therapy

Several new reports on growth hormone (GH) therapy support the benefits of GH use in PWS, while continuing the trend of a reassuring safety profile.

Seizure Disorder in Prader-Willi Syndrome

Although it's rarely mentioned in clinical descriptions of PWS, anyone who hangs around families with PWS knows that seizures seem to occur much more frequently in those with PWS than typical individuals. Even in cases where a seizure disorder is never formally diagnosed, many parents have, at one time or another, had their child with PWS evaluated because they appear to be having seizures or unusual movements.

Inhaled Growth Hormone -- Don't hold your breath...

Growth hormone (GH) replacement therapy is one of the few effective treatments available today to help children with PWS overcome some of the problems associated with the disorder. Kids with PWS are generally troopers when it comes to receiving their daily GH shot, but, wouldn't it be nice if they could get the same result without the needle?

Linking Learning with Neurodevelopmental Functioning - Final Report

This project was funded by the Foundation for Prader Willi Research in 2006 and conducted by Drs. Gregory Olley and Anne Wheeler and their team at the University of North Carolina, Chapel Hill (UNC), Center for Development and Learning. Dr. Wheeler is currently finishing the analysis and preparing publications from the study. Following publication, a more detailed analysis will be available, but Dr.

Growth Hormone Therapy Does Not Worsen Scoliosis

The incidence of scoliosis in Prader-Willi syndrome is quite high (~30% in children under the age 10; up to ~80% in kids over the age of 10, compared to <3% in the general population). Because moderate to severe scoliosis can be associated with significant complications, and may require surgical intervention, it's important to understand and minimize contributing factors.