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FPWR Blog

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

Hyperphagia Biomarkers in Children With PWS: Elizabeth Roof [VIDEO]

This blog contains excerpts from Hyperphagia Biomarkers in Children With PWS, a presentation given by Elizabeth Roof 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...

Topics: Research

Dr. Jennifer Miller: Standards of Care for PWS

This blog provides a brief summary of Standards of Care for PWS, a presentation given by Dr. Jennifer Miller at the FPWR 2017 conference. We've captured some of the key points in the notes below. Dr. Jennifer Miller, a pediatrician and researcher at ...

Topics: Research

Results of Beloranib Clinical Trial In PWS Published

The results of Zafgen's phase 3 study evaluating the use of the drug beloranib to curb hunger and induce weight loss in individuals with PWS has been published. The study was conducted by McCandless, et al; an abstract is here. Those familiar with th...

Topics: Research

Mom Urges Parents to 'Build Our Village' By Joining the PWS Registry

I'm thrilled to announce the Global PWS Registry, launched in 2015, now has more than 1,100 participants enrolled! If you haven't enrolled, please visit the registry website today to get started. If you have enrolled, please update your information i...

Topics: News

Scientific Day 2017: PWS Science Highlights & Abstracts

FPWR’s 2017 Scientific Day was held in conjunction with the FPWR annual conference on Thursday, August 24th in Indianapolis, Indiana. Approximately 75 people attended, including scientists, families and professionals from the pharmaceutical industry....

Topics: Research

Uridine: A New Player in Appetite Regulation

New research has revealed that a molecule called uridine plays a role in appetite regulation. This discovery could pave the way for potential new targets to control appetite and obesity.

Topics: Research

The Nelson Family: Paving the Way for Schaaf-Yang Research

In 2014, when Emma Nelson was born, NICU staff told her parents, Kim and Justin, to prepare for the worst. But for the next two years, Emma had no diagnosis. Kim and Justin were directed from one specialist to the next trying to find answers to their...

Topics: Stories of Hope, SYS

Proud Brothers Cheer On Their Sister With PWS

A special contribution by Jessica Mitchell What did you feel when you first heard the words “Prader-Willi syndrome”? Did you feel sadness? Anger? Relief? If you were anything like me, you felt the “normal” slip right through your fingertips. You read...

Topics: Stories of Hope