PWSA Blog

Prader-Willi Syndrome Association | USA Announces the Resignation of CEO Paige Rivard and Appointment of Interim CEO Stacy Ward

July 12, 2023 – The Prader-Willi Syndrome Association | USA (PWSA | USA) announces the resignation of its CEO, Paige Rivard, MBA. Paige held the CEO position for the past three years and has led many efforts to advance awareness, research opportunities, and provide support for families in the Prader-Willi syndrome (PWS) community. The association...

Acadia Pharmaceuticals Announces Next Phase for ACP-101 (Intranasal Carbetocin) After Meeting with FDA

This week, Acadia Pharmaceuticals made the announcement the drug company plans to begin Phase 3 of ACP-101, intranasal carbetocin, later this year after a recent meeting with the U.S. Food and Drug Administration (FDA). ACP-101 is currently being studied to treat hyperphagia in Prader-Willi syndrome. Learn more about this announcement by reading Acadia Pharmaceuticals’ full...

Harmony Biosciences Shares Positive Data from Pitolisant Study at “SLEEP 2023” Annual Meeting

PWSA | USA received information from Harmony Biosciences that the company announced positive findings from the Phase 2 study of its drug pitolisant, a treatment for excessive daytime sleepiness (EDS) in people with Prader-Willi syndrome (PWS). The data was presented at the 37th Annual Meeting of the Associated Professional Sleep Societies (APSS). According to Harmony...

Better Speech and Hearing Month

The month of May is recognized as Better Speech and Hearing Month to bring awareness to the many speech, language, swallowing and hearing disorders among children and adults. Individuals with PWS often present with a variety of clinical features that may impact their speech and language development (Lewis, 2023) including reduced articulation, hypernasality or hypo...

Fundraising Spotlight: AXES FOR HOPE

We are excited to share the upcoming Hope United fundraiser in New Mexico, benefitting PWSA | USA, AXES FOR HOPE! This great event is hosted by PWS parents and PWSA | USA parent mentors Jonathan and Maggie Andrews in New Mexico. Event Details When: Sunday, May 28, 2023 from 12:00 – 5:00 p.m. Where: ABQ Ax...

A Historic Milestone for the PWS Community: PWSA | USA Receives Joint Congressional Support to Declare May 15th as National PWS Awareness Day

Today, May 15th, our PWS community has something new to celebrate! PWSA | USA is excited to announce U.S. Congressman Paul D. Tonko (D-NY) and Congresswoman Maria Elvira Salazar (R-FL) have filed a joint resolution declaring May 15, 2023, and every May 15th thereafter, Prader-Willi Syndrome (PWS) Awareness Day in the United States of America!...

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