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FPWR Blog

FPWR

Recent Posts

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.

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 ...

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.

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...

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...

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 ...

Topics: News, Clinical Issues, Resource Development

Grandma Runs the NYC Marathon in Honor of Grandchild

A special blog contribution from Karla Leighty. Prior to Lana's birth, our daughter-in-law, Krysten, knew something wasn't right with her pregnancy. The baby wasn't moving as much as she should have been,and the ultrasounds indicated she was smaller ...

Topics: Stories of Hope

From Holidays to Baby Showers: Your Custom Card Can Make A Difference

Did you know that by simply sending a card, you have the power to make a difference in the lives of those affected by Prader-Willi syndrome? It's true! Every time you send a card, you not only spread awareness about this rare genetic syndrome but als...

Topics: Advocacy

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...

Topics: News, Hunger Satiety, Research