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Once She Sets Her Mind to Something, Nothing Can Stop Her!

May 14, 2020

A special contribution by guest blogger Alice Shapley Our beautiful and amazing daughter Anna has Prader‑Willi syndrome (PWS). There are so many things for which I am incredibly, deeply proud of Anna, but today I want to talk about the

PWS Registry Data: Vision [INFOGRAPHIC]

April 15, 2020

Although many symptoms of PWS are difficult to treat, impaired vision is a place where corrective lenses and/or surgery can make huge improvements. Data from the Global PWS Registry shows that the most common vision issues in PWS are nearsightedness,

Fundraising for PWS Research Has Empowered Our Family

April 8, 2020

A special contribution by guest blogger Felicia DiMuccio Growing up, I was never quite sure what I wanted to be, but I always knew I wanted to be a mom. Finding out I was pregnant with Siena was a dream

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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