As individuals with PWS grow up into young adulthood and age into mid-life years, some continue to live with parents or other family, while others reside in group home or supported living situations. Here, we focus on data from the Global PWS Registr...
Hello FPWR friends! I’m Lisa Burnett and I am thrilled to share that I’ve recently joined the FPWR team. I’d love to share a little bit about myself so that you all can get to know me.
Topics: News
In this 50‑minute video, Dr. Tony Holland, Dr. Lauren Schwartz, and Dr. Deepan Singh discuss two promising studies of therapies for Prader-Willi syndrome: Vagus Nerve Stimulation (VNS) and bright light therapy. The session includes Q&A from parti...
Topics: Research
The time immediately following a diagnosis of PWS can be very difficult, and parents typically are dealing with an overwhelming amount of new information. It's important to take the time you need to process what is happening and connect with others f...
Topics: Research
Today, Harmony Biosciences announced topline data on the primary outcome, excessive daytime sleepiness, from their Phase 2 proof-of-concept trial in patients with Prader-Willi syndrome, or PWS. The study included 65 volunteers, ages 6 to 65, who were...
Topics: Research
The Foundation for Prader-Willi Research announces our second round of Research Awards in 2022, exceeding $1,800,000. Representing the largest single round of funding in FPWR history, we are excited to fund a robust group of 14 grants that encompass ...
Topics: Research
Thanks to almost 900 PWS families who completed multiple surveys in the Global PWS Registry, a new study examining sleep disorders, seizures, and psychiatric behaviors provides a great deal of valuable data and new insights into the relationship betw...
Topics: Research
Is your loved one getting a good night’s sleep? Sleep apnea is a major concern for people with Prader-Willi syndrome, affecting as many as 70% of all participants in the Global PWS Registry.
Back by popular demand is FPWR's Harvesting Hope Distance Challenge! Nearly 100 virtual trotters joined us for the challenge last year covering a whopping 3,750 miles during the 7-week period. How far can we get this year? That's up to you!
Topics: News
