New call-to-action
New call-to-action
New call-to-action

Foundation for Prader-Willi Blog | Research (4)

Categories

What Is the PWS CLIC [2023 Conference Video]

In this 10‑minute video, Caroline Vrana-Diaz, FPWR Research Project Coordinator, explains how the PWS CLIC is helping to improve standards of care for people with Prader-Willi syndrome.
March 1, 2024 Read More

Topics: Clinical Issues, Research

Understanding the Impact of Schaaf-Yang Syndrome from Caregiver Insights

Schaaf-Yang syndrome (SYS) is an ultra-rare disorder that was first identified in 2013. It is caused by mutations in the MAGEL2 gene, a gene that is also deleted or inactivated in Prader-Willi syndrome (PWS). Because SYS is a relatively newly describ...
February 21, 2024 Read More

Topics: Research, Parents, SYS

Schaaf-Yang Syndrome Update with Dr. Schaaf [2023 Conference Video]

In this 85‑minute video, Dr. Christian Schaaf, medical director and department chair at the Institute of Human Genetics at the University of Heidelberg and visiting professor at the Baylor College of Medicine, explains our understanding of Schaaf-Yan...
February 16, 2024 Read More

Topics: Research, SYS

Feeding Tube Use and Complications in Babies With PWS

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,...
February 13, 2024 Read More

Topics: Research

New Research into the Sense of Smell in PWS

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,...
January 31, 2024 Read More

Topics: Research

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

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

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

4star120x60

NORD_MembershipLogo_Platinum_2021

excellence-in-giving-logo

Main Menu

Our Mission

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

Contact Us

Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

FPWR
440 N Barranca Ave #3620
Covina, CA 91723

Copyright © 2020. All Rights Reserved. Terms of Use. Privacy Policy. Copyright Infringement Policy. Disclosure Statement.