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Research (10)

Recommendations for Management of Sex Hormones in Adults With PWS

June 28, 2022

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. These papers are freely available to download and share with

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

June 21, 2022

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 insights

Sleep Disorders and PWS [2021 CONFERENCE VIDEO]

June 7, 2022

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.

Strategies for Managing Behavior in PWS [2021 CONFERENCE VIDEO]

May 16, 2022

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 Conference. Click below to watch

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

May 9, 2022

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

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

May 3, 2022

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

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

April 26, 2022

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 to watch the video. If

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

April 25, 2022

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

Partnering for a Successful IEP [2021 CONFERENCE VIDEO]

April 1, 2022

In this 1 hour and 12‑minute video, Dr. Katy Chambers, former high school principal, teacher, and mom to Daniel who lives with PWS, shares her journey maneuvering the special educational system from both sides of the table. The session includes

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