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FPWR Blog

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FPWR and PWSA-USA Partner for Telehealth Needs Assessment

FPWR and the Prader-Willi Syndrome Association | USA (PWSA | USA) have partnered to conduct a study to measure interest in telehealth as a way of increasing access to care from Prader-Willi syndrome specialists. In addition, the project aims to bette...
August 12, 2020 Read More

Topics: Research

We Celebrate Our Life with PWS

A special contribution by guest blogger Jennifer Lee Three little words changed our lives forever: Prader-Willi syndrome. Jhett was 23 days old. He had spent his life to this point in the NICU. We knew we were testing for PWS, and due to my research ...
August 11, 2020 Read More

Topics: Stories of Hope

Carbetocin for PWS: Phase 3 Clinical Trial Results Announced

Today, Levo Therapeutics announced the promising results of their Phase 3 Clinical Trial of carbetocin for treating symptoms of PWS.
August 6, 2020 Read More

Topics: Research

Facial and Voice Processing Issues Affect Social Interactions in PWS

Children and adults with PWS frequently show impairments in their social interactions. New research on how people with PWS process visual and auditory cues could lead to social interventions that help.
July 31, 2020 Read More

Topics: Research

Hip Dysplasia in Babies with PWS May Not Need Aggressive Treatment

A new study looking at the long-term consequences of early hip dysplasia does not support an aggressive approach to treating hip dysplasia in babies with PWS. The paper provides useful guidance and suggestions for physicians who are evaluating babies...
July 22, 2020 Read More

Topics: Research

Car-aoke, Other Creative Fundraisers Fueled By Social Distance

During a time when much feels uncertain, one constant that we can count on is the never ending drive and tenacity of our PWS families and their desire to improve the future of Prader-Willi syndrome through supporting research.
July 13, 2020 Read More

Topics: News

Scoliosis Publication is Resource for Parents and Medical Professionals

Parents may want to download and keep a copy of this review on scoliosis in PWS. The paper comes from Dr. Harold van Bosse, an orthopedic surgeon at Shriner’s Hospital with extensive experience in caring for kids with PWS and scoliosis, and Dr. Merli...
July 10, 2020 Read More

Topics: Research

Study Supports Eye Tracking to Measure Hyperphagia in PWS

Results have now been published on a study looking at eye tracking and hyperphagia in younger children with PWS (ages 3-11 years old). The study found that children with PWS who had higher hyperphagia questionnaire scores and more advanced nutritiona...
July 2, 2020 Read More

Topics: Research

Evidence For Accelerated Aging In Young Adults with PWS

Two recent papers address an area that has received very limited attention to date, aging in PWS. Both papers point to differences in aging in young adults with PWS compared to typical individuals and suggest that this is an area that is in need of f...
June 23, 2020 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).

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Our Mission

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

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

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Covina, CA 91723

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