Foundation for Prader-Willi Blog (32)

PWS Registry Data: Tube Feeding [INFOGRAPHIC]

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 participants re...

February 25, 2020 Read More

Topics: Research

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 finall...

February 18, 2020 Read More

Topics: Stories of Hope

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...

February 5, 2020 Read More

Topics: Research

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 hee...

January 10, 2020 Read More

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 ...

January 8, 2020 Read More

Topics: News

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 i...

January 6, 2020 Read More

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 p...

January 2, 2020 Read More

Topics: Research

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 don...

December 4, 2019 Read More

Topics: Research

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 ...

December 2, 2019 Read More

Topics: News

FPWR Blog

Categories

PWS Registry Data: Tube Feeding [INFOGRAPHIC]

PWS Research Provides the Hope We Desperately Needed As New Parents

Study Shows Vagus Nerve Stimulation Could Help Treat Behavior in PWS

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

Fundraising for PWS — Panel [2019 CONFERENCE VIDEO]

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

IMPACT 2019

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

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

About FPWR

Main Menu

Our Mission

Contact Us