Welcome to the Foundation for Prader-Willi Research (FPWR)
Founded in 2003 by parents of children born with this rare genetic disorder, FPWR's mission is to eliminate the challenges of Prader-Willi syndrome (PWS) through the advancement of research. We welcome everyone to join with us as we work to secure the future for our children with PWS!
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.[ Read more . . . ]
Submitted by Theresa Strong on Fri, 07/03/2009 - 06:52
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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?
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[ Read more . . . ]
Submitted by Theresa Strong on Fri, 07/03/2009 - 05:28
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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. Wheeler is pleased to share the following general summary and preliminary results with the PWS community.
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[ Read more . . . ]
Submitted by Theresa Strong on Thu, 05/07/2009 - 05:34
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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.
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[ Read more . . . ]
Submitted by Theresa Strong on Tue, 04/07/2009 - 15:52
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