Foundation for Prader-Willi Blog (52)

'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

Human Growth Hormone Dosing for PWS

This article is adapted from a presentation by Jennifer Miller, Ph.D. Human growth hormone therapy for PWS been proven to improve characteristic delays in physical and social development, and the cognitive benefits of human growth hormone for PWS are...

July 10, 2017 Read More

Topics: Research

Your Child With PWS Can Have a Beautiful Life

A special contribution by guest blogger Loraine Hernandez Loraine shared her story via our Stories of Hope questionnaire. How has your child exceeded your expectations? With the horrible scenario at the hospital when she was born, I really didn't hav...

July 7, 2017 Read More

Topics: Stories of Hope

FPWR Blog

Categories

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

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

Researcher Schaaf Predicts Dramatic Increase In PWS Quality of Life

Accelerating the Development of Treatments for PWS

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

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

Human Growth Hormone for Adults with PWS

Human Growth Hormone Dosing for PWS

Your Child With PWS Can Have a Beautiful Life

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