PWSA Blog

How Utah is Enhancing Food Security for Prader-Willi Syndrome Individuals: 2023 PWS National Convention

Contributed by Christopher Rich, Utah PWS Association Among the exhibitors at this year's PWSA | USA National Convention was the Utah PWS Association, which focused on food security and its role in managing PWS symptoms. The exhibition booth showcased practical strategies and innovative solutions to create a controlled environment, emphasizing the importance of food security...

Share Your School Lunch Tips

On Friday, July 28, 2023, PWSA | USA's Special Edition Pulse will focus on back-to-school and offer helpful tips from our Family Support team as well as how to best utilize our School Success resources. We also want to hear from YOU, our PWS community, on what has worked for you / your loved one...

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!...

Harmony Biosciences Shares Statement Regarding Narcolepsy Drug WAKIX

In response to yesterday’s news from Scorpion Capital regarding Harmony Biosciences, we have received the below community-facing statement. Harmony Biosciences shares information about the company’s drug WAKIX, which is used to treat excessive daytime sleepiness (EDS) or cataplexy in adults with Narcolepsy. If you have questions, please reach out to info@pwsausa.org. —————————————————————————- On behalf of...

Convention Spotlight: Julie Casey

We are excited to come together again in-person for the 37th PWSA | USA National Convention, June 21-24, 2023 in Orlando, FL! Leading up to this much-anticipated event, members of our PWS community are sharing their Convention memories and why it’s beneficial for others to attend! Below, PWS parent Julie Casey gives details about her...

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