When people think about Prader-Willi syndrome (PWS), conversations often focus on the challenges. But just as important—and too often overlooked—are the strengths and positive attributes that define individuals with PWS.
An expert review, written by Drs. Miller, Shoemaker, Salehi, and Corletto, offers practical clinical guidance for the use of diazoxide choline extended-release (DCCR/VYKAT™ XR), the first FDA-approved treatment for hyperphagia in Prader-Willi syndrom...
In January 2008, The Dallas Morning News published an article titled “Parents Seek Answers.” At the center of the story was Kathryn McGhee, a mother navigating the daily realities of Prader-Willi syndrome while also helping shape a growing research m...
Topics: Stories of Hope, Research, Parents, hopefull
May is PWS Awareness Month. It’s a time to better understand Prader-Willi syndrome and to see what’s possible. In this edition of HopeFULL Highlights, three families share what makes their loved ones remarkable, including recent milestones and the mo...
Topics: Stories of Hope
FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits, while others can be completed remotely. Some trials are testing new drugs, while others are intervention (...
Topics: Research
Research into learning and behavior in PWS continues to provide valuable insights into how individuals with PWS experience the world and how caregivers can better support them. Two research studies explore important aspects of how individuals with PW...
Topics: Research
Families raising a child with Prader-Willi syndrome know how difficult temper outbursts can be. In the study “The Characteristics of Temper Outbursts in Prader-Willi Syndrome,” Drs. Rice, Einfeld, and Woodcock, experts in the field of PWS, took a clo...
Topics: Research
The Foundation for Prader-Willi Research (FPWR) today announced a venture philanthropy investment in ConSynance Therapeutics, a clinical-stage biotechnology company developing CSTI-500, an investigational therapy for the treatment of behavioral dysre...
Skin picking is a common and challenging behavior seen in people with Prader-Willi syndrome (PWS), and for many families, it can be incredibly distressing.
