Events and Fundraisers
Thank you to everyone who attended this year's Virtual National Convention! Session Recordings are NOW AVAILABLE. Click here to watch.
Reserve your stay TODAY at Compass by Margaritaville, Anna Maria Island, FL *Limited number of rooms available
Latest News
Supporting Siblings
Contributed by Anne Fricke The quotes in this blog come from the transcript of an NPR Talk of the Nation broadcast, “Siblings with Special Needs Change Childhood”, that aired on Sept. 25, 2012. Don Meyer, the person quoted, is the founder of the Sibling Support Project. As the parent of a child with PWS, I...
Conversation with a Sibling
Transcript from an interview by Carrie Larsen, Director of Marketing and Communications for PWSA | USA with Leora Saacks, adult sibling to Andrea (living with PWS). Interview log: I’m Leora, I’m Andrea Saacks’ younger sister. Andrea is 2 years older than me; she has Prader-Willi syndrome, and we live in Philadelphia. I live about half...
Harmony Biosciences Initiates TEMPO PWS Study
Harmony Biosciences Holdings, Inc. is seeking participants for its TEMPO study, a global Phase 3 trial investigating pitolisant as a potential treatment for excessive daytime sleepiness (EDS) in individuals aged six years and older with Prader-Willi syndrome (PWS). Pitolisant is a medication that could help manage sleepiness and behavioral issues in people with PWS. There...