Foundation for Prader-Willi Blog (14)

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, Schaaf-Yang Syndrome

Share Your Rare: HopeFull Highlights

As Rare Disease Day approaches on February 29, we want to spotlight the extraordinary qualities of our children with Prader-Willi syndrome, celebrating their unique passions and contributions to the world. Our objective is simple: to inspire hope. We...

February 19, 2024 Read More

Topics: Stories of Hope

Feeding Tube Use and Complications in Babies With PWS

Insights into how feeding tubes are used in infants with PWS—and the complications families may encounter—have emerged from the “Feeding Tube Survey” completed by nearly 350 families in the Global PWS Registry. By analyzing these responses, Drs. Sani...

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

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

FPWR Blog

Categories

What Is the PWS CLIC [2023 Conference Video]

Understanding the Impact of Schaaf-Yang Syndrome from Caregiver Insights

Share Your Rare: HopeFull Highlights

Feeding Tube Use and Complications in Babies With PWS

New Research into the Sense of Smell in PWS

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

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