Topics: Research
A paper has just been published that provides new insight into the use of feeding tubes in babies with PWS, thanks to the participation of ~350 families who completed the “Feeding Tube Survey” in the Global PWS Registry. Drs. Sani Roy, Ann Scheimann,...
It is well established in science as well as culture that the smell of food is linked to appetite, but despite the extensive research being conducted to understand the biology underlying the most notable symptom of Prader-Willi Syndrome, hyperphagia,...
Topics: Research
The Hyperphagia Questionnaire for Clinical Trials (HQ-CT) is typically completed by caregivers for individuals with PWS who are enrolled in clinical trials. The questionnaire is designed to evaluate changes inhyperphagia during the course of the tria...
In this 1 hour and 2‑minute video, Dr. Jessica Duis, an Associate Professor of Pediatrics and Genetics at Children’s Hospital Colorado, University of Colorado, will highlight presentations of sleep disorders in PWS, diagnostic evaluation, and treatme...
Topics: Research, Sleep, Video Gallery
Many of the symptoms of Prader-Willi syndrome (PWS) are well known, including problems with the hypothalamus, low muscle tone, hyperphagia, behavioral issues, and the risk of obesity and related complications. However, as people with PWS are living l...
Topics: Research
For individuals with PWS, when it comes to food there is a lot of focus on hyperphagia (excessive hunger). However, another issue associated with mealtimes can be the physical act of eating and drinking itself. Many individuals with PWS struggle with...
Topics: Research
One of the most important roles FPWR serves is that of a ‘convener’, bringing together those with an interest in advancing the science of PWS, and the care of those living with PWS. On Oct 5-6, 2023, FPWR held its annual PWS Research Symposium – our ...
We are pleased to announce the recipients of the second round of grants for 2023, totaling $1,000,000 in awards, as part of the Foundation for Prader-Willi Research's (FPWR) ongoing commitment to advancing research in Prader-Willi (PWS) and Schaaf-Ya...
Soleno Therapeutics recently shared data from their DESTINY PWS study, an international, placebo-controlled Phase 3 study of DCCR (Diazoxide Choline Controlled-Release) drug trial. To further establish the effects of DCCR administration on hyperphagi...
Topics: News, Hunger Satiety, Research