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FPWR Blog

Introducing PADQ: a New PWS-Specific Measure for Anxiousness & Distress

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

Sleep Apnea in People with PWS

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.

Topics: Research, Sleep

Harvesting Hope Distance Challenge Returns

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

FPWR Announces 2022 Champion of Hope Award Winner

The Foundation for Prader-Willi Research (FPWR) is thrilled to announce the recipient of the 2022 Champion of Hope Award, James Resnick, PhD. The Champion of Hope Award was established to recognize individuals who have made impactful contributions to...

Topics: News

Unique Art Auction Benefits PWS Research

Twenty paintings are available to the highest bidders in a unique art auction benefiting the Foundation for Prader-Willi Research (FPWR).

Topics: News

‘She’s Changed Our Family Forever’: Claire Carucci’s Story of Hope

A special contribution by guest blogger Claire Carucci. Our 17-month-old daughter Caroline has Prader-Willi syndrome (PWS), and it has forced me to be stronger than I ever thought I would need to be. When I was looking at this little baby in the hosp...

Topics: Stories of Hope

Visiting PWS Researchers Inspires Hope

A special contribution by guest blogger Lisa Matesevac This summer, my family made our annual 15-hour trek to visit family in Buffalo, NY. This was a much-needed reprieve for our family as Evan, our teenage son with PWS, was recovering from recent sp...

Topics: Research

'Change Invites Us to Reimagine, and That’s Such a Gift' Says PWS Hero

A special contribution by guest blogger Julie Foge Eliza turned eight this month, and it’s hard to put into words just how much our life has changed in that span of time. I knew it would the moment we got her diagnosis, of course, but it didn’t happe...

Topics: Stories of Hope

Study Sheds Light on Temper Outbursts in Prader-Willi Syndrome

Temper outbursts are a common challenge for many people with Prader-Willi syndrome. The published study "The characteristics of temper outbursts in Prader-Willi syndrome" sheds light on temper outbursts in PWS. Drs. Rice, Einfeld and Woodcock, all ve...

Topics: Research