Topics: Stories of Hope
A special contribution by guest blogger Rebecca Noel On May 25th our beautiful son Bron arrived to our tears of joy. He was so tiny and precious, and needed time in the NICU. He seemed to be making wonderful progress and we were full of hope. We had ...
In this one hour and 22-minute video, Dr. Christian Schaaf, Department Chair of Human Genetics at Heidelberg University, discusses current research into Schaaf-Yang syndrome (SYS). Click below to watch the video. If you're short on time, scroll down ...
FPWR’s community is made up of parents like you, determined to make a difference for our loved ones with PWS. Hosting a fundraiser is a meaningful way to support research, and it doesn’t have to take a lot of time or energy. Every event – big and sma...
You are probably aware that individuals with PWS have a slightly elevated risk for thrombosis (blood clot formation), with 8.4% of respondents aged 30-61 years reporting a history of one or more in our 2018-2022 survey, compared to <1% in the non-...
Topics: Research
You won’t want to miss these speakers at the 2023 FPWR Family Conference this October in Denver, CO.
Topics: News
A recent report from Scorpion Capital, a financial research group that specializes in 'activist short selling', makes several allegations about potential side effects of the drug Wakix (pitolisant), which is currently being evaluated in a clinical tr...
Topics: Advocacy
In this one hour and 9-minute video, Elizabeth Roof, Dr. Lauren Schwartz, and Dr. Deepan Singh explore behavior strategies and mental health issues in people with PWS.
Topics: Mental Health, Behavior
Do you ever wonder why you’re so strongly motivated to exercise while it seems that some others inexplicably aren’t? The answer may lie in the differences between your gut microbiomes! Nature, the world’s leading multidisciplinary science journal, re...
Topics: Research
As a rare disorder, PWS is most well-known to the medical community and general population for hyperphagia, or intense food-seeking behavior. However, family members, caregivers, and individuals with PWS know that behavior difficulties and mental hea...
Topics: Research