PWSA | USA (Prader-Willi Syndrome Association | USA) and FPWR (Foundation for Prader-Willi Research) are thrilled to announce a groundbreaking collaboration to address the social challenges faced by individuals with Prader-Willi syndrome (PWS). FPWR funding has facilitated the development of the Building Our Social Skills (BOSS) curriculum, a highly effective social skills intervention program created...
Soleno Therapeutics Reports Positive Results from DCCR Study C602 for Prader-Willi Syndrome
Soleno Therapeutics, Inc. has revealed positive outcomes from the randomized withdrawal phase of Study C602, an extended treatment study of DCCR (Diazoxide Choline) Extended-Release tablets for Prader-Willi syndrome (PWS). The results, which showed a significant improvement in hyperphagia-related behaviors in the DCCR group compared to the placebo group, support Soleno's plan to submit a New...
Calling All New Englanders! Support PWSA | USA at the 14th Annual Hunter Lens Golf Tournament
Calling all New Englanders - Join the Lens family for a full afternoon of fun activities! The 14th Annual Hunter Lens Golf Tournament will take place Saturday, October 7, 2023, at 12:00 p.m. EST at the Back Nine Club (17 Heritage Hill Dr., Lakeville, MA 02347). Enjoy time with family and friends while participating in...
Transformative Tales: Empowering Families Dealing with Prader-Willi Syndrome Through Food Security
Contributed by Christopher Rich, Utah PWS Association Living with Prader-Willi Syndrome (PWS) presents unique challenges, particularly in managing food-related behaviors. The experiences of families dealing with PWS takes on an extra layer of complexity, because of the significance of food control and security devices in their lives. In the below excerpts, we dive into those...
Neuren Pharmaceuticals is Happy to Announce the First 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: Rare Disease Research (RDR), located in Atlanta, GA, is now welcoming children with PWS and their families to their clinicfor screening into this trial. The duration of active treatment in this study is 13 weeks. In a preclinical study in animals, physiological and behavioral symptoms were normalized within six...
Harmony Biosciences Issues Statement Regarding Confidence in Pitolisant Drug
Harmony Biosciences has reaffirmed its confidence in the strength of WAKIX® (Pitolisant) patents, after receiving a positive ruling from the U.S. Patent and Trademark Office (USPTO) rejecting the request for reexamination. WAKIX® is used to treat excessive daytime sleepiness (EDS) or cataplexy in adults with Narcolepsy. Read Harmony Biosciences' community-facing statement below: We are pleased...
2023 Moms’ Retreat Attendees Selected!
Thank you to everyone who submitted an application to attend PWSA | USA's first-ever Moms' Retreat, October 12-15, 2023, in Palm Spring, California! On Friday, August 18, 2023, 30 applicants were randomly selected to attend the event. Our staff will be reaching out to these individuals to provide additional details and collect information. Below you...
Help Rare Disease Research Efforts by Sharing Blood, Urine Samples with PWS-COMBINEDBrain Biorepository
We are sharing details on behalf of The Foundation for Prader-Willi Research (FPWR) to spread the word about an upcoming and important PWS research opportunity. FPWR is collaborating with COMBINEDBrain to establish a biorepository dedicated to blood and urine samples. This initiative aims to expedite the development of treatments for individuals with Prader-Willi Syndrome, as...
Aardvark Therapeutics Announces FDA Pediatric Disease Designation for PWS, Expansion of Phase 2 Clinical Trial
Aardvark Therapeutics recently announced the drug company has received Pediatric Disease Designation for PWS from the U.S. Food and Drug Administration (FDA), and will expand its Phase 2 clinical trial of oral ARD-101 in young adults with PWS. According to Aardvark Therapeutics, this FDA designation means the company is eligible for a Rare Pediatric Disease...
Get to Know PWSA Egypt and Middle East!
Individuals and families affected by PWS who are living in Egypt and the Middle East now have an established community to find help and hope. PWSA Egypt and Middle East was officially founded on June 1, 2023 by Walaa Mohamed, mom to Ahmed, 13, living with PWS. PWSA Egypt & Middle East will serve the...
What is Disenfranchised Grief and How Can PWSA | USA Offer Support?
Contributed by PWSA | USA Alterman Family Support Counselor Kim Tula, MS, CSW Grief is the response to loss, particularly to the loss of someone or some living thing that has died, to which a bond or affection was formed. But what about the feelings of loss associated with living with PWS? Is this a...
PWS Hope United Spotlight: Kissing for a Cause
Mr. & Mrs. Steven & Tara Davis of Wilbraham, Massachusetts tied the knot this past weekend and celebrated their love by "Kissing for a Cause" during the reception! As a long-time friend of Melanie McDonald, mom to Josephine, 5, living with PWS, Tara wanted to raise money for PWSA | USA in honor of Josephine...