PWSA Blog

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...

Living and Thriving with PWS (Part 3)

Living and Thriving with PWS – Love, Faith, and Future Grace By Derek Montecalvo   One day, at the residential home in Barnstable where I was living, there was a commotion outside as staff and residents transitioned a new resident into his room. A beautiful young woman happened upon my doorstep during this transition....

Statement from Members of the Clinical Advisory Board (CAB) Regarding People with PWS and COVID-19 Immunization  

The types of vaccines now available against COVID-19 use mRNA technology.  This type of vaccine has been under development for many years and, unlike other immunizations, does not place a weak or inactive germ into the body, but instead teaches cells in our body to make an immune response that then produces antibodies which provide protection...

Harmony Biosciences Enrolls First Patient in Phase 2 Trial Evaluating Pitolisant For Excessive Daytime Sleepiness in Patients with Prader-Willi Syndrome

PLYMOUTH MEETING, PA and CHICAGO, IL, December 15, 2020 — Harmony Biosciences Holdings, Inc. (“Harmony”) (Nasdaq: HRMY), a pharmaceutical company dedicated to developing and commercializing innovative therapies for patients living with rare neurological disorders who have unmet medical needs, today announced the first patient has been enrolled in a Phase 2 trial evaluating the...

Holidays and Siblings

The holidays, usually filled with excitement and family connection, often mean something completely different for families with a member with Prader-Willi Syndrome (PWS). Exorbitant amounts of food, continual interruptions to the normal schedule, and extended social interactions add stress for the individual with PWS and the entire family. Siblings of individuals with PWS are...

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