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Foundation for Prader-Willi Blog | Research

Recommendations for Management of Sex Hormones in Adults With PWS

Two new papers from an international group of PWS expert physicians outline the clinical experience and provide recommendations for sex hormone replacement therapy in adult males and females with PWS.

Topics: Research

Insights Into the Sleep, Seizures, and Psychiatric Behaviors in PWS

A newly published paper examines sleep disorders, seizures, and psychiatric concerns in PWS. Thanks to almost 900 PWS families who completed multiple surveys in the Global PWS Registry, the study provides a great deal of valuable data and new insight...

Topics: Research

IPWSO Survey Finds Most COVID-Positive People With PWS Had Mild Cases

COVID-19 infections may be particularly worrisome for our loved ones with PWS, since many of the complications associated with PWS—obesity, diabetes, poor respiratory function—are known risk factors for severe COVID disease. In addition, other neurod...

Topics: Research

Sleep Disorders and PWS [2021 CONFERENCE VIDEO]

In this 1 hour and 19‑minute video, Dr. Aaron Chidekel, a pediatric sleep specialist, and Cindy Szapacs, mom to a teenage son with PWS, discuss excessive daytime sleepiness and other symptoms and treatments for sleep disorders in people with PWS. The...

Topics: Research

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

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

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