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FPWR Blog

Strategies for Managing Behavior in PWS [2021 CONFERENCE VIDEO]

In this one hour and 17‑minute video, Dr. Tony Holland, Emeritus Professor of Psychology, Cambridge University, discusses strategies for effective behavior management in PWS. The session includes Q&A from participants in the 2021 FPWR Virtual Con...

Topics: Research

PWS Clinical Trials Alert

  FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits while others can be completed remotely.  Some trials are testing new drugs while others are intervention ...

Topics: Research

Exciting New Treatment May Reduce Disruptive Behaviors in PWS

Recent evidence from FPWR-supported studies show that Vagus Nerve Stimulation (VNS) may reduce temper outbursts and other disruptive behaviors in individuals with PWS. With your support, FPWR is taking the steps needed to advance a clinical trial of ...

Topics: Research

Baby Teeth Cells Give Insight on the Molecular Basis of Autism in PWS

In Prader‑Willi syndrome (PWS), the two main genetic subtypes are PWS by deletion (a small part of dad’s chromosome 15 is missing), and PWS by maternal uniparental disomy (UPD; where two copies of chromosome 15 are present from the mother with no cop...

Topics: Research

‘Most exceptional human being that I know’: PWS Mom Inspired by Son

A special contribution by guest blogger Rebecca Krylow. Rebecca shared her story via our Stories of Hope Questionnaire. How has your child exceeded your expectations? Joey is truly the most exceptional human being that I know. He is kind; considerate...

Topics: Stories of Hope

FPWR Announces 1st Round of 2022 Grants of Over $1M in Funding [VIDEO]

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2022 totaling $1,137,148. Our largest single round of funding in FPWR history, FPWR is excited to fund a robust group of 10 grants that encompass projects that w...

Topics: Research

A Photo of Your Loved One May Help Another Family Receive a Diagnosis

Rare genetic disorders can often be challenging to diagnose, resulting in a long diagnostic odyssey. New research aims to shorten the time it takes to get a diagnosis by utilizing artificial intelligence to analyze facial features. Photos of individu...

Topics: Research

Feeding Techniques for Children Ages 0-2 [2021 CONFERENCE VIDEO]

In this 59‑minute video, Sara Parker, MA, a pediatric speech pathologist, discusses feeding techniques for children with Prader‑Willi syndrome ages 0‑2. The session includes Q&A from participants in the 2021 FPWR Virtual Conference. Click below t...

Topics: Research

Ghrelin drug shows no impact on hyperphagia in PWS in a clinical trial

Ghrelin is a small hormone produced in the stomach that stimulates increased appetite. Although it mediates other important effects, such as growth hormone release and a better ability to cope with stress, its direct impact on appetite led to it bein...

Topics: Research

Schaaf-Yang Syndrome Heroes Say, 'You Can do Hard Things!'

A special contribution by guest blogger Leslie Born “No degree, or training, or book, or conversation, could have ever prepared me to be the parent of a child with a disability.” – Amanda Griffith-Atkins These words ring so true that some days I can’...

Topics: Stories of Hope