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FPWR Blog

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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

Endocannabinoids As a Potential Therapy for Hyperphagia in PWS

The mechanisms in the nervous system that control appetite and satiation are complex. And the dysfunctions in those mechanisms that lead to hyperphagia and obesity in people with PWS are likewise complex and unclear. Yet, several hypothalamic appetit...
August 16, 2017 Read More

Topics: Research

Orthopedic Issues and Prader-Willi Syndrome: Q&A With Dr. van Bosse

Like many medical providers, Dr. Harold van Bosse came to specialize on Prader-Willi Syndrome (PWS) by happenstance. In the late 90s, a pediatric patient with PWS came under his care for treatment of scoliosis. At the time, not much was known about o...
August 14, 2017 Read More

Topics: Research

Studies Show PWS Caregiver Stress Can And Should Be Addressed

Parenting a child with special needs can be full of wonderful unexpected moments of joy such as seeing your child accomplish a difficult task or witnessing him or her make progress in therapies after months of hard work. These are unique and special ...
August 9, 2017 Read More

Topics: Research

Feeding Challenges and PWS: Q&A With Speech Pathologist Sara Parker

Food, hunger, mealtimes, eating — these are all important issues for people with PWS and their families. Sara Parker knows all about feeding challenges and PWS. She's a speech pathologist who specializes in pediatric feeding and has spent more than t...
August 8, 2017 Read More

Topics: News, Research

'We Believe There Will Be Relief For Children With PWS': A Mom's Story

A special contribution by One SMALL Step host Samantha Kalasek Once upon a time, there was a "boy mom" blessed to be outnumbered. She believed she was living a very basic tale until she turned the page and realized it was actually a choose-your-own-a...
August 4, 2017 Read More

Topics: Stories of Hope

Hougland On PWS Research: The Right People Asking The Right Questions

Dr. James Hougland is a multi-award–winning biochemist at Syracuse University and recipient of a 2013 BIG Grant through the Foundation for Prader-Willi Research. FPWR funded his study on ghrelin O-acyltransferase (GOAT), an enzyme that modifies ghrel...
August 3, 2017 Read More

Topics: Research

Researcher Schaaf Predicts Dramatic Increase In PWS Quality of Life

Schaaf-Yang Syndrome (SYS) is a rare genetic condition that shares some clinical features with PWS. SYS is caused by the disruption of the MAGEL2 gene on chromosome 15, which is also missing in people with PWS. People with each of the syndromes exper...
August 1, 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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Our Mission

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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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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Covina, CA 91723

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