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Research Blog

PWS Research Provides the Hope We Desperately Needed As New Parents

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 finally shouted from across the room. Twenty minutes later, our nurse handed Evan to me. “He’s ... I ... he,” I tried to find the words to tell her what she already knew — Evan was struggling for breath...

First-Ever PWS Genome Project Gets Crowdfunded

A new pilot project will map the genomes of 50 people with PWS and integrate that information with the Global PWS Registry data — with support from donors around the world.

This first-ever PWS Genome Project seeks to help researchers better understand differences in PWS symptoms and severity from person to person as well as issues of safety and efficacy of treatments in each person.

Study Shows Vagus Nerve Stimulation Could Help Treat Behavior in PWS

Temper outburst and disruptive behaviors are among the most challenging aspects of PWS, both for the individual with PWS and their family (Tsai 2018). Now, a promising study finds that four out of five participants had a reduction in temper outbursts after wearing a activated vagus nerve stimulation device.

 

PWS Clinical Trials Alert: January 2020

We have exciting news to share! Soleno therapeutics has successfully enrolled 100 patients into their Phase 3 clinical study of DCCR. This is our second clinical trial which has completed enrollment in the past 2 months!

Several additional studies are still enrolling patients. FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities...

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

 

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 comes on the heels of Millendo’s Zephyr study reaching its enrollment goal (although its still recruiting PWS children age 4-7)...

Fundraising for PWS — Panel [2019 CONFERENCE VIDEO]

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 involved in supporting PWS research, generating hope for themselves and others. Click below to watch the video, or scroll down to read a transcript of the session.

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

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 sites in the U.S. and the UK.  No serious, unexpected adverse events related to DCCR have occurred in DESTINY PWS to date.

IMPACT 2019

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 of our accomplishments from this past year.

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

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 extensive research to understand PWS behaviors and develop strategies to improve mental well-being for the entire family dealing with PWS. She spearheaded the PWS Profile and Hyperphagia questionnaires...

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

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 challenges affect a large percentage of individuals with PWS and their families. These challenges are often under-appreciated and yet the impact on families and individuals with PWS can be profound.