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!...
Category: News
Remembering the Life and Impact of Ken Smith
Kenneth (Ken) Smith, 62, of Sarasota, FL, died peacefully on March 7, 2023, at Tidewell Hospice House with his life partner, Patty LaRoche, by his side. He is also survived by his mother and stepfather, Wilma and Clinton Beauford of Pittsburgh, and his sister, Kathy Smith. Ken was preceded in death by his father, Roland...
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...
Harmony Biosciences Encouraged by New Data in Pitolisant Phase 2 Study
This morning, PWSA | USA received new information from Harmony Biosciences regarding its Phase 2 study of pitolisant. This study's purpose is to evaluate the safety and efficacy of the drug in patients with Prader-Willi syndrome (PWS). The company shared the following community-facing statement: "Today, Harmony Biosciences announced topline data on the primary outcome, excessive...
PWSA | USA Announces Keynote Speaker for 2023 National Convention
We are excited to announce the Keynote Speaker for PWSA | USA's 2023 National Convention, Cristol Barrett O’Loughlin who is is the Founder and CEO of A ANGEL AID CARES (Nonprofit Group Enriching Lives, Inc.) You won't want to miss her motivational and inspirational message! Cristol's Keynote speech title is Caring for the Caregivers: From brokenhearted to belonging...
Soleno Therapeutics Announces Start of Randomized Withdrawal Study for PWS Drug DCCR
On Monday, October 3, 2022, PWSA | USA received the news that Soleno Therapeutics will begin its randomized withdrawal study for the drug DCCR, which is being studied as a treatment for Prader-Willi syndrome (PWS). This is a promising next step in Soleno's C602 clinical trial. Soleno shared this randomized withdrawal period will only affect...
Radius Health to Close its RAD011 Clinical Trial
PWSA | USA received the news that Radius Health has decided to end its phase 2/3 clinical trial to evaluate RAD011 as a potential treatment for Prader-Willi syndrome (PWS). Radius was recently purchased by Gurnet Point Capital, who shared it will begin winding down the SCOUT-015 study throughout the month of October. On behalf of...
Radius Health Releases Helpful Resources for SCOUT-015 Trial
In an effort to help our PWS community better understand its SCOUT-015 trial, Radius Health has released several resources about the process of the study, trial sites, and about their drug RAD011 a synthetic cannabidiol oral solution, which is being studied as a possible treatment for hyperphagia and related behaviors in Prader-Willi syndrome. Click on...
Soleno Therapeutics Provides DCCR Update, Continued Communications with FDA
PWSA | USA is happy to share the most recent news from Soleno Therapeutics regarding DCCR: This morning, Soleno shared that through continued dialogue with the FDA, the FDA acknowledged the data from a proposed randomized withdrawal phase of Study C602 would have the potential to address its concerns regarding the adequacy of the overall...
Kasey Bedard, Ph.D., BCBA-D, IBA Shares Findings from Research Study Funded by PWSA | USA
PWSA | USA is excited to share the findings from a grant funding opportunity, awarded to and studied by Kasey Bedard, Ph.D., BCBA-D, IBA. This grant assisted Kasey with her work on PWS Smart-Start, a behavior-analytic caregiver training program. Kasey gives a brief overview of her results below. ------------------------------------------------------------------------------------------ Contributed by Kasey Bedard The purpose...
Saniona Pausing All Clinical Trials for PWS Drug Tesomet Due to Funding Limitations
This morning, Saniona announced they will be voluntarily pausing all Phase 2b Clinical Trials for the drug Tesomet, which is being studied as a treatment for Prader-Willi syndrome (PWS). Saniona has explained that this pause is due to funding limitations and has nothing to do with the "safety or efficacy" of the drug itself. PWSA...
PWSA | USA’s 2021 Annual Report
Dear friends, On behalf of PWSA | USA's Board of Directors and Staff, we are sincerely grateful for YOU, our PWS community, for coming together in advocacy, family support, and research over the past year. We would not be able to offer the resources, care, and hope to our families and individuals living with PWS...