Topics: Research
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...
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
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
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
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
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
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
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
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.
Topics: News