PWSA Blog

Pioneers in PWS – The Parent Mentoring Program

“Your child has Prader-Willi syndrome.”  Everyone remembers where you were when you first heard those words.  What does that mean?  What do we do now?  What will life be like for my child?  In today’s world, you Google the term and likely see Prader-Willi Syndrome Association appear in response.  When you complete the new diagnosis...

Sleep Disturbances in Prader-Willi Syndrome

Sleep health is essential for everyone; it is just as important to take care of ourselves as parents and caregivers as it is for those living with Prader-Willi syndrome (PWS). We understand that disordered sleep has implications for cognitive outcomes, mental and physical health, and work and school performance. Sleep disturbances can occur from many...

Leading PWSA | USA; Our Executive Directors

The leadership in an organization is one of the most important elements to achieving long-lasting success.   It is important for this individual to be passionate, knowledgeable and organized.  They must be a team builder as well as build and maintain alliances.  They must be vigilant in making sure there are the proper resources to maintain...

Our First Pioneers to Identify Prader-Labhart-Willi Syndrome: Dr.’s Zellweger, Prader, Willi and Labhart; Part 2 in a Series

Dr. Hans Zellweger was a tall, adventuresome doctor from a patrician family in Chur, the oldest town in Switzerland.  After seeing the devastating effects of polio after World War I, his life goal was to understand neuromuscular disorders in children.  After training across Europe, and working with Dr. Albett Schweitzer in Africa, he became chief...

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