Foundation for Prader-Willi Blog

FPWR

PWS Clinical Trial Webinar: NNZ-2591

Neuren Pharmaceuticals is now enrolling children with PWS in a phase 2 clinical trial to measure the safety and efficacy of NNZ-2591. NNZ-2591 is a novel synthetic analog of cyclic glycine-proline (cGP), a metabolite of IGF-1. NNZ-2951 regulates the ...

March 26, 2024 Read More

Topics: Clinical Trials Opportunities

Behavior and Mental Health - Age 5 and Up [2023 CONFERENCE VIDEO]

In this 30‑minute video, Patrice Carroll, Elizabeth Roof, and Dr. Deepan Singh discuss strategies for addressing behavioral and mental health challenges in children aged 5 and up with Prader-Willi syndrome.

March 14, 2024 Read More

Topics: Research, Behavior, Family Conference

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 10, 2024 Read More

Topics: News, Research

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

Beyond Ironman: Nurturing Perseverance and Advocacy in the Face of PWS

A special blog contribution from Abbie Ogilbee Training for an Ironman is no small commitment. It takes planning, preparation, dedicated time away from family, special equipment, and countless hours of practicing the different sports. Preparing for t...

December 5, 2023 Read More

Topics: Stories of Hope

Improving the PWS Clinical Trial Experience for Families and Clinical Study Site Staff

It has been an exciting time for PWS research and clinical trials. The field has been working hard to find effective treatments for the symptoms of PWS to help our children lead more independent and fulfilling lives. In the last several years, there ...

November 29, 2023 Read More

Topics: News, Clinical Issues, Resource Development

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Recent Posts

PWS Clinical Trial Webinar: NNZ-2591

Behavior and Mental Health - Age 5 and Up [2023 CONFERENCE VIDEO]

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

VNS4PWS Clinical Trial Opens for Enrollment

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

Beyond Ironman: Nurturing Perseverance and Advocacy in the Face of PWS

Improving the PWS Clinical Trial Experience for Families and Clinical Study Site Staff

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