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Research Blog

Dr. Jennifer Miller: Standards of Care for PWS [VIDEO]

This blog provides a brief summary of Standards of Care for PWS, a presentation given by Dr. Jennifer Miller at the FPWR 2017 conference. 


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...

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...

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...

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.

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...

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 the pamphlets the doctor gave you and cried. You Googled — or your husband Googled — and you cried some more...

Dream, Believe, Achieve: It's a Wrap! FPWR 2017 Conference

FPWR's 2017 family conference was our largest conference yet. With the theme Dream, Believe, Achieve, it attracted more than 230 PWS parents, grandparents, children, clinicians and researchers.

Recovering the Maternal 15th Chromosome Gene: Lalande's PWS Research

Prader-Willi Syndrome (PWS) most commonly results when a set of key genes are missing on the paternal 15th chromosome (deletion) — or else when the paternal chromosome has been entirely replaced by a maternal copy (uniparental disomy, UPD). One of the most frustrating aspects of PWS is the fact that perfectly reasonable versions of the missing 15th chromosome genes exist — i.e., the maternal copies...

Altered Link In Brain Regions Could Play Role In PWS Hyperphagia

As with many neurodevelopmental disorders, individuals with PWS often struggle with developmental delays and impaired cognition. Within the Global PWS Registry, 75% of participants who have had IQ testing scored with some level of intellectual disability.