PWSA Blog

Neurodiversity and Prader-Willi Syndrome

Neurodiversity, a term coined by Australian sociologist Judy Singer in the mid-1990s, is a social justice movement that seeks to bring awareness, equality, and inclusion to people of various neurological abilities. According to Harvard Medical School, “The word neurodiversity refers to the diversity of all people, but it is often used in the context of...

Medical graphic for weight loss medications for Prader-Willi Syndrome

Ask Nurse Lynn: Weight Loss Medications

Question: Male, 33, Deletion How much promise would a weekly injection of Ozempic or Trulicity have on my son for weight loss? Nurse Lynn’s Response: Thank you for your question. From the limited research on the PWS population and the use of GLP-1 medications, they do show some success in glycemic control but do not...

Woman with Prader-Willi Syndrome lays on a bed attached to wires for a sleep study

Tips for First Time Sleep Studies

Contributed by Jennifer Andrews A diagnosis of PWS requires families to learn all sorts of new things, among them medical procedures we may not be familiar with. A fairly common one, the sleep study, can be a little daunting when you don’t know what to expect. Prader Willi Syndrome can manifest with a variety of...

2025 PWS Conference

2025 International PWS Conference Announcement!

PWSA | USA is pleased to announce a new partnership with the Foundation for Prader-Willi Research (FPWR) and the International Prader-Willi Syndrome Organisation (IPWSO) to host United in Hope – an International PWS Conference to be held June 24-28, 2025 at the Arizona Grand Resort & Spa in Phoenix, Arizona! The conference theme, “United in Hope”...

Medical graphic for article on Anxiety and SSRIs for Prader-Willi Syndrome

Ask Nurse Lynn: Anxiety and SSRIs

Question: Female, 18, deletion, Arkansas: She has diabetes, one kidney does 25%, now even more increased anxiety. The first time we are trying anything for anxiety. The Dr is giving her Lexapro- the generic. Is there a certain one recommended? Also, is there a buildup or psychosis danger? Nurse Lynn’s Response: Thank you for your...

Nutrition in the PWS Family

Michael Tan, MS, RD, LDN, is a Dietitian who works with Dr. Jennifer Miller at the University of Florida Health. He spoke at PWSA | USA’s United in Hope Convention in June of 2023 and sees a large number of families in the PWS community. I reached out to Michael with some general questions about...

Blue backgound with Harmony Bioscienes label for pitolisant as treatment for Prader-Willi Syndrome

Pitolisant Receives Orphan Drug Designation

Pitolisant from Harmony Biosciences Receives Orphan Drug Status from FDA for Treatment of PWS The FDA has granted Orphan Drug status to pitolisant, the trial drug from Harmony Biosciences to treat excessive daytime sleepiness (EDA) and behavioral disturbances. The designation shows that the FDA considers pitolisant to be a promising treatment for people with PWS. ...

Neuren Pharmaceuticals PWS Study

Neuren Pharmaceuticals Opens Third Trial Site for Phase II PWS Study

Neuren Pharmaceuticals is pleased to announce their third site participating in their Phase II, Open Label, PWS Study (Neu-2591-PWS-001) is now open for screening! Important information regarding this exciting milestone: Three sites are now open to enrollment! Rare Disease Research (RDR), located in Atlanta, GA, and Uncommon Cures, located in Chevy Chase, MD (8 miles outside of Washington, D.C.) and...

Maintaining Goal Weight

Question: We have a 40 year old son. He’s 5’6” and weighs 140. In 2006 he was at his maximum weight of 170. That year he moved into a community living arrangement with 2 other PWS individuals. He lost 35 pounds and had maintained that weight until recently. We’ve had to move him from the...

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