Foundation for Prader-Willi Blog

VNS4PWS Clinical Trial Opens for Enrollment

The Foundation for Prader-Willi Research is pleased to announce our VNS4PWS clinical trial is now open and enrolling participants with PWS ages 10-40 who experience disruptive behaviors and temper outbursts.

January 8, 2024 Read More

Topics: Research, Clinical Trials

Presentations and Management of Sleep Disorders in PWS [2023 Conference Video]

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...

December 20, 2023 Read More

Topics: Research, Sleep, Video Gallery

Cancer in Prader-Willi Syndrome: What Research Reveals

The core features of Prader-Willi syndrome (PWS) are well known: challenges with the hypothalamus, low muscle tone, hyperphagia, behavioral issues, and a lifelong risk of obesity and related complications. Thanks to earlier diagnosis, improved clinic...

December 19, 2023 Read More

Topics: Research

PWS Registry Data: Swallow Studies [INFOGRAPHIC]

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...

December 14, 2023 Read More

Topics: Research

2023 PWS Research Symposium - Sharing Progress, Fostering Collaborations

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 ...

November 20, 2023 Read More

Topics: Research, Learning

FPWR Announces 2nd Round of 2023 Grants

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...

November 14, 2023 Read More

Topics: Research, Schaaf-Yang Syndrome

Recordings from FPWR’s Annual Family Conference: What’s Next for DCCR?

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...

October 25, 2023 Read More

Topics: News, Hunger Satiety, Research

Progressive Resistance Training in Young People With PWS: Protocol for a Randomized Trial (PRESTO)

It is well known that individuals with Prader-Willi syndrome (PWS) display muscle weakness, hypotonia, and decreased lean muscle mass. Those with PWS have a 25–40% decrease in muscle mass compared to non-affected individuals, and muscle strength is a...

September 13, 2023 Read More

Topics: Research

Growing Up Alongside Prader-Willi Syndrome

Being a mom and a psychologist, I have often wondered about the impact of growing up with a person with Prader-Willi Syndrome (PWS) on siblings. There are research studies that indicate that growing up with a sibling with a developmental disability c...

August 15, 2023 Read More

Topics: Research

Foundation for Prader-Willi Blog | Research (8)

Categories

VNS4PWS Clinical Trial Opens for Enrollment

Presentations and Management of Sleep Disorders in PWS [2023 Conference Video]

Cancer in Prader-Willi Syndrome: What Research Reveals

PWS Registry Data: Swallow Studies [INFOGRAPHIC]

2023 PWS Research Symposium - Sharing Progress, Fostering Collaborations

FPWR Announces 2nd Round of 2023 Grants

Recordings from FPWR’s Annual Family Conference: What’s Next for DCCR?

Progressive Resistance Training in Young People With PWS: Protocol for a Randomized Trial (PRESTO)

Growing Up Alongside Prader-Willi Syndrome

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