Foundation for Prader-Willi Blog (7)

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

Acadia Initiates Phase 3 COMPASS PWS Study of Carbetocin

Acadia Pharmaceuticals has initiated its pivotal Phase 3 COMPASS PWS study of carbetocin nasal spray (ACP-101) in the United States. COMPASS PWS is a 12-week study evaluating the efficacy and safety of carbetocin nasal spray for hyperphagia in approx...

December 6, 2023 Read More

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

2023 PWS Research Symposium - Sharing Progress, Fostering Collaborations

One of the most important roles FPWR serves is that of a ‘convener’, bringing together those with an interest in advancing the science of PWS, and the care of those living with PWS. On Oct 5-6, 2023, FPWR held its annual PWS Research Symposium – our ...

November 20, 2023 Read More

Topics: Research, Learning

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 ...

November 15, 2023 Read More

Topics: Stories of Hope

FPWR Blog

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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]

Acadia Initiates Phase 3 COMPASS PWS Study of Carbetocin

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

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

2023 PWS Research Symposium - Sharing Progress, Fostering Collaborations

Grandma Runs the NYC Marathon in Honor of Grandchild

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