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FPWR Blog

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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

Accelerating the Development of Treatments for PWS

While genetic therapy has the potential to be transformative for Prader-Willi syndrome, the fact is genetic therapy technology is still in its early stages and it could be many years before it’s viable for PWS. While FPWR continues to move genetic ap...
July 26, 2017 Read More

Topics: Research

Dr. Dimitropoulos: Boosting Social Cognition in PWS With Pretend Play

Imaginative play has an important role in child development. Scientific evidence suggests that the ability to engage in "pretend play" may translate into increased abilities in social interactions and social-cognitive function. However, children with...
July 24, 2017 Read More

Topics: Research

Brain Stimulation (tDCS) Research Shows Promise for Hyperphagia in PWS

Many of the clinical trials for therapies in PWS involve a drug treatment of some sort. However, there is also ongoing work exploring other ways to improve behaviors and possibly hyperphagia (excessive appetite) in PWS. One such approach is transcran...
July 19, 2017 Read More

Topics: Research

Human Growth Hormone for Adults with PWS

This article is adapted from a presentation by Jennifer Miller, Ph.D. Both children and adults who have been diagnosed with PWS will show symptoms of growth hormone deficiency including low muscle mass and poor cognitive development. Human growth hor...
July 17, 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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