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FPWR Blog

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 s...

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

Learnings from the Global PWS Community at the 2022 IPSWO Conference

In July 2022, FPWR’s Executive Director Susan Hedstrom, Director of Research Programs Theresa Strong, and Lauren Schwartz, FPWR’s leader of the Mental Health & Behavior Research Programs, attended the International Prader-Willi Syndrome Organisat...

Topics: Research

2022 PWS Research Symposium and Family Conference

This September 29 - October 1, parents, caregivers and medical professionals from across the country will once again be coming together to connect, learn, and be inspired at the Foundation for Prader-Willi Research’s Annual Research Symposium and Fam...

Topics: Research, Parents, Learning

​​Why I’m Crossing the Globe for FPWR’s Annual Conference

A special contribution by guest blogger Will Greene When our son Ari was diagnosed with Prader-Willi syndrome in January 2022, FPWR emerged as a beacon of hope in our caregiver journey. That’s why I’m making the long trip from Singapore to Chicago to...

Topics: Stories of Hope, Parents