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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

More reasons than ever to be optimistic of a new FDA approved treatment for PWS

January 10, 2020

We have more reasons than ever to be optimistic of a new FDA approved treatment for PWS in 2020. Just last week we learned of successful enrollment for the second ongoing pivotal PWS clinical trial (Soleno’s Destiny PWS study), which

Fundraising for PWS — Panel [2019 CONFERENCE VIDEO]

January 8, 2020

In this 45-minute video, Sarah Peden, Director of One Small Step and FPWR's Community Development Director highlights the success of the PWS community in raising funds for PWS research. Sarah and parents of children with PWS share how they've gotten

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

IMPACT 2019

January 2, 2020

In 2019, more than 11,000 donors supported PWS research and our mission to eliminate the challenges of PWS. We would like to thank all of our supporters: everything we do is made possible by you! Here are just a few

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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