Topics: Research
In this 1 hour and 19‑minute video, Dr. Aaron Chidekel, a pediatric sleep specialist, and Cindy Szapacs, mom to a teenage son with PWS, discuss excessive daytime sleepiness and other symptoms and treatments for sleep disorders in people with PWS. The...
In this one hour and 17‑minute video, Dr. Tony Holland, Emeritus Professor of Psychology, Cambridge University, discusses strategies for effective behavior management in PWS. The session includes Q&A from participants in the 2021 FPWR Virtual Con...
Topics: Research
In Prader‑Willi syndrome (PWS), the two main genetic subtypes are PWS by deletion (a small part of dad’s chromosome 15 is missing), and PWS by maternal uniparental disomy (UPD; where two copies of chromosome 15 are present from the mother with no cop...
Topics: Research
The Foundation for Prader-Willi Research announces our first round of Research Awards in 2022 totaling $1,137,148. Our largest single round of funding in FPWR history, FPWR is excited to fund a robust group of 10 grants that encompass projects that w...
Topics: Research
Rare genetic disorders can often be challenging to diagnose, resulting in a long diagnostic odyssey. New research aims to shorten the time it takes to get a diagnosis by utilizing artificial intelligence to analyze facial features. Photos of individu...
Topics: Research
In this 59‑minute video, Sara Parker, MA, a pediatric speech pathologist, discusses feeding techniques for children with Prader‑Willi syndrome ages 0‑2. The session includes Q&A from participants in the 2021 FPWR Virtual Conference. Click below t...
Topics: Research
Ghrelin is a small hormone produced in the stomach that stimulates increased appetite. Although it mediates other important effects, such as growth hormone release and a better ability to cope with stress, its direct impact on appetite led to it bein...
Topics: Research
In this one hour and 3‑minute video, several investigators discuss a Phase 3 Clinical Trial of DCCR, a controlled release tablet of diazoxide choline, run by Soleno Therapeutics. The session includes Q&A from participants in the 2021 FPWR Virtual...
Topics: Research
In this 1 hour and 12‑minute video, Dr. Katy Chambers, former high school principal, teacher, and mom to Daniel who lives with PWS, shares her journey maneuvering the special educational system from both sides of the table. The session includes Q&...
Topics: Research