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FPWR Blog

The FPWR Grant Program: An Overview [VIDEO]

This blog provides a brief summary of the FPWR Grant Program Overview presentation given by research team member Theresa Strong at the FPWR 2017 conference. You can watch the full presentation by clicking on the embedded video below. In case you don'...

Topics: Research

How Schaaf-Yang Syndrome and PWS Are Related [VIDEO]

This blog provides a brief summary of the FPWR 2017 conference presentation about the ways in which Schaaf-Yang syndrome and Prader-Willi syndrome are related. The talk was presented by Drs. Christian Schaaf, Ryan Potts and Rachel Wevrick. You can wa...

Topics: Research, SYS

Total Hip and Knee Arthroplasty In PWS: Van Bosse Research

Issues with bone development and structure are very common in individuals with Prader-Willi syndrome (PWS). While most people in the PWS community are familiar with issues spinal issues, in particular scoliosis, people with PWS are also at higher ris...

Topics: Research

Bringing PWS Caregiver Perspectives Into the Development of Therapies

The Prader-Willi Syndrome Clinical Trials Consortium (PWS-CTC) was created in 2015 to address challenges and accelerate clinical trials for PWS. Key challenges include better understanding the progression of the disease (or natural history), developi...

Topics: Research

The PWS Registry: How It Can Help You [VIDEO]

This blog provides a brief summary of the PWS Registry presentation by research team member Jessica Bohonowych at the FPWR 2017 conference. You can watch the full presentation by clicking on the embedded video below. In case you don't have time to wa...

Topics: Research

Team Eva Grace Runs TCS Marathon to 'E-race' PWS

From Survivor to Marathon Fundraiser “In 2012, I experienced the worst and best year of my life," says Ronda. "In one week, I gave birth to twins, nearly lost one of them, and experienced my first hurricane. The following weeks brought rare disease d...

Topics: News

FPWR's Fall 2017 PWS Research Update

At FPWR, we're fortunate to have a strong community of supporters who are leading the charge so our loved ones with PWS can one day lead FULL and independent lives! Thanks to their commitment to PWS research, FPWR has initiated a number of research p...

Topics: Research

FPWR Research Team: Town Hall Session on PWS Research [VIDEO]

This blog provides a brief summary of the FPWR Research Team: Town Hall Session on PWS Research, a series of four presentations at the FPWR 2017 conference. You can watch the full FPWR Research Team: Town Hall Session on PWS Research presentations he...

Topics: Research

Singing, Dancing, Changing the World: Our Mighty Girl With PWS

A special contribution by Noelle Scalzo Our story started out as so many others do with the dream of a "perfect" and "healthy" baby. We wanted to bring just one more tiny human into our world, a sibling for our now 4 year old Danica to play with and ...

Topics: Stories of Hope