Foundation for Prader-Willi Blog (15)

‘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...

September 20, 2022 Read More

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...

September 13, 2022 Read More

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...

August 30, 2022 Read More

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...

August 11, 2022 Read More

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...

August 8, 2022 Read More

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...

August 6, 2022 Read More

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...

August 5, 2022 Read More

Topics: Stories of Hope, Parents

Top 10 Reasons to Attend the 2022 PWS Family Conference

Join us September 30-October 1 for our annual gathering of movers, shakers, thinkers, and doers at this year’s FPWR Family Conference! Here are the top 10 reasons you need to be there:

August 1, 2022 Read More

Topics: News

FPWR 2022 Conference Speakers Announced

You won’t want to miss these speakers at the 2022 FPWR Family Conference this September and October in Chicago, IL. Are you ready to join like-minded game-changers with direct access to the people, knowledge, and inspiration you need to help your chi...

July 19, 2022 Read More

Topics: News

FPWR Blog

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

Visiting PWS Researchers Inspires Hope

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

Study Sheds Light on Temper Outbursts in Prader-Willi Syndrome

Learnings from the Global PWS Community at the 2022 IPSWO Conference

2022 PWS Research Symposium and Family Conference

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

Top 10 Reasons to Attend the 2022 PWS Family Conference

FPWR 2022 Conference Speakers Announced

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