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FPWR Blog

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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...
September 15, 2017 Read More

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...
September 13, 2017 Read More

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....
September 11, 2017 Read More

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.
September 8, 2017 Read More

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...
September 6, 2017 Read More

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...
September 1, 2017 Read More

Topics: Stories of Hope

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.
August 31, 2017 Read More

Topics: News

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 th...
August 24, 2017 Read More

Topics: Research

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 disabi...
August 22, 2017 Read More

Topics: Research

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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