PWSA | USA received news from Harmony Biosciences that the company is working on a plan to begin their Phase 3 clinical trial for pitolisant, also known as WAKIX, following a positive End-of-Phase 2 meeting with the U.S. Food and Drug Administration. WAKIX is an FDA approved drug used to treat excessive daytime sleepiness or...
Gedeon Richter Now Recruiting for KITE-PWS Clinical Trial
You or someone you love could be part of developing new therapies for Prader-Willi syndrome. Learn about Gedeon Richter's research study KITE-PWS, also known as RGH-706-003, to evaluate an experimental drug for hyperphagia in people with Prader-Willi syndrome. The oral drug RGH-706 works by blocking melanin-concentrating hormone (MCH), which is a key part in the...
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...
Spotlight on Advocacy: PWS Advocate Erin Cooper Carter, PhD Continues to Fight for our Ohio Families!
Erin Cooper Carter, PhD (mom to Victoria, age 6 living with PWS) is leading the effort to have PWS added to the state’s list of developmental disabilities in Ohio! This important piece of legislation is being filed by Representative Bride Rose Sweeney (D-16) and will likely be co-sponsored by Representative Nick Santucci (R-64). When asked...
Congratulations to PWSA | USA’s 2023 Volunteer Award Recipients
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” – Margaret Mead On June 24, 2023, the last day of PWSA | USA’s 37th National Convention, seven individuals who have gone above and beyond to not only spread the mission of PWSA...
PWSA | USA’s Hope United Gala Silent Auction is Now LIVE!
Anyone can bid on our amazing Hope United Gala Auction items! Click the images below to check out just a few of the 40+ experiences, sports memorabilia, jewelry, baskets, and more. There's truly something for everyone to enjoy.
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...
Support PWSA | USA During Kendra Scott’s PWS Awareness Month Giveback!
To close out a memorable and historic PWS Awareness Month, PWSA | USA is partnering with Kendra Scott for one final awareness celebration! The jewelry company will host a PWS Awareness Month Giveback event on Saturday, May 27, 2023, from 12:00 - 2:00 p.m. EST to support PWSA | USA's advocacy, family support, and research...
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!...