Foundation for Prader-Willi Blog (7)

Standards of Care for People with PWS Ages 3-9 [2023 Conference Video]

In this one-hour and 2‑minute video, Dr. Parisa Salehi, a Pediatric Endocrinologist at Seattle Children’s and SCH PWS Clinical Director, discusses standards of care for people with PWS ages 3-9.

January 30, 2024 Read More

Topics: ages: 4-7, Parents, Children 3-6

10 Highlighted Research Accomplishments from 2023

2023 marks yet another record-breaking year in our pursuit of treatments for Prader-Willi (PWS) and Schaaf-Yang (SYS) syndromes. In this blog, we shine a spotlight on 10 research accomplishments from 2023, each contributing to a deeper understanding ...

January 16, 2024 Read More

Analysis of Hyperphagia Questionnaire for Clinical Trials (HQ-CT) Scores

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...

January 10, 2024 Read More

Topics: News, Research, Parents

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

Mom of Triplets Celebrates Son's Progress, Finds Hope In PWS Research

A special contribution by Lindsey Larson, Host of Live Life Full Lewistown, IL Being a first time mom is hard. Having triplets makes it even more challenging. Add to that a rare diagnosis, and it’s ... well, interesting is the only word that I can fi...

January 1, 2024 Read More

Topics: Stories of Hope

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

Malignancies in Prader-Willi Syndrome: What New Research Reveals

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...

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

Standards of Care Ages 10+ [2023 Conference Video]

In this one hour and 25-minute video, Dr. Diane Stafford, Endocrinologist at Stanford University School of Medicine, provides an overview of care for people with PWS over age 10 including medical needs, currently available medications, supplements, l...

December 12, 2023 Read More

Topics: Parents, Adults, Children 12-18

FPWR Blog

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Standards of Care for People with PWS Ages 3-9 [2023 Conference Video]

10 Highlighted Research Accomplishments from 2023

Analysis of Hyperphagia Questionnaire for Clinical Trials (HQ-CT) Scores

VNS4PWS Clinical Trial Opens for Enrollment

Mom of Triplets Celebrates Son's Progress, Finds Hope In PWS Research

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

Malignancies in Prader-Willi Syndrome: What New Research Reveals

PWS Registry Data: Swallow Studies [INFOGRAPHIC]

Standards of Care Ages 10+ [2023 Conference Video]

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