Research Blog

Changes In Weight and BMI In Adolescents and Adults with PWS

In this 6-minute video, Drs. Theresa Strong and Caroline Vrana-Diaz review data and findings from the PWS Weight Study conducted by the Foundation for Prader-Willi Research. This study has been published in the Orphanet Journal of Rare Diseases.

Top 10 Reasons to Attend the 2020 Virtual PWS Family Conference

The FPWR Family Conference takes place October 6-9, and this year, it's virtual and free. Here are the top 10 reasons you need to be there!

PWS Registry Data: Impact of COVID-19 on PWS Families [INFOGRAPHIC]

The Global PWS Registry recently launched a survey to capture the impact of COVID-19 on PWS families. The results reveal families' challenges, concerns, and successes in this unprecedented time.

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 better understand the demographic makeup of the PWS parent and caregiver population, to measure stress associated with traveling for healthcare, and to measure the wellbeing of children with PWS.

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 via Google, I knew how my family’s life was going to change with a positive diagnosis. And so the time came. I, alone by Jhett’s bedside, was told of the confirmation of PWS.

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.

 

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.

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 with PWS.

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.  

Scoliosis In PWS Covered In New Publication

Parents may want to download and keep a copy of a newly available 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...