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PWS Registry Data: Tube Feeding [INFOGRAPHIC]

February 25, 2020

For parents of an infant with PWS, one of the first major challenges they face is feeding difficulties and having their baby consume enough nutrition and calories. Data from the Global PWS Registry shows that more than 75% of registry

PWS Research Provides the Hope We Desperately Needed As New Parents

February 18, 2020

A special contribution by guest blogger Natalie Brenneman Evan emerged into the world lifeless and blue. I remember watching my husband shifting back and forth on his tiptoes behind the medical team working to resuscitate him. “It’s a boy!” he

Study Shows Vagus Nerve Stimulation Could Help Treat Behavior in PWS

February 5, 2020

Temper outbursts and disruptive behaviors are among the most challenging aspects of PWS, both for the individual with PWS and their family (Tsai 2018). Emerging research suggests that vagus nerve stimulation (VNS) may hold promise as a treatment for reducing

Soleno Therapeutics Completes Target Enrollment in Ongoing DESTINY PWS Phase III Trial of DCCR in Prader Willi Syndrome

January 6, 2020

Soleno Therapeutics has announced that it has completed their target enrollment for their ongoing Phase 3 trial of DCCR for the treatment of PWS. Approximately 100 people with PWS have enrolled in the study. Enrollment of patients was from 27

Self-Care for PWS Caregivers — Elisabeth Dykens [2019 CONFERENCE VIDEO]

December 4, 2019

In this 41-minute video, Dr. Elisabeth Dykens presents on the results of stress and the importance of self-care when parenting a child with special needs. Dr. Dykens is Professor of Psychology and Human Development at Vanderbilt Unversity and has done

FPWR Receives award from the Moriah Foundation to support the development of a Mental Health Guidebook for Prader-Willi Syndrome

December 2, 2019

The Foundation for Prader-Willi Research is excited to announce the receipt of a financial award from the Moriah Foundation which will be used to support the development of a Mental Health Guidebook for Prader-Willi Syndrome (PWS). Mental health and behavior

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Gillian Segall Inspires PWS Community With Message of Hope [2019 CONFERENCE VIDEO]

November 20, 2019

Gillian Segall is an 18-year-old high school senior from Chicago, who loves to swim and take care of animals and also happens to have PWS. In this inspiring 15-minute interview, Gillian kicks off the 2019 FPWR Family Conference in New

IEPs and PWS — Advocating for Your Child [2019 CONFERENCE VIDEO]

November 18, 2019

In this 51-minute presentation, Dr. Katy Chambers helped participants understand the IEP (Individualized Education Plan) process and succeed in the IEP journey. Katy Chambers is a school principal of nine years and mom to Daniel (age 7), who lives with

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How a Modified Atkins Diet for PWS Changes the Microbiome [2019 CONFERENCE VIDEO]

November 17, 2019

Have you ever wondered what is the optimal diet for a person with PWS? We may not be able to answer that question just yet, but in this 29-minute video, Dr. Anne Scheimann from Johns Hopkins shares preliminary data from

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