Topics: Stories of Hope
— A special contribution by guest blogger Jacquelyn K. Jacquelyn shared her story via our Stories of Hope Questionnaire.
Together, the Foundation for Prader-Willi Research, Angelman Syndrome Foundation and Dup15q Alliance are raising awareness of the similarities between Angelman, Dup15q, and Prader-Willi syndromes.
Topics: Research
On April 18th, 2012, our beautiful daughter, Peyton, was born. At 5lbs, 7oz, she was little, but everyone thought she was just weak and that she would get stronger as she grew. Peyton was not strong enough to nurse and she struggled with a bottle. We...
Topics: Stories of Hope
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.
Topics: Research
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!
Topics: News
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...
Topics: Research
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 ...
Topics: Stories of Hope
Today, Levo Therapeutics announced the promising results of their Phase 3 Clinical Trial of carbetocin for treating symptoms of PWS.
Topics: Research
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.
Topics: Research