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FPWR Blog

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Genetic Therapy and PWS — Researcher Fireside Chat [2019 CONFERENCE VIDEO]

Gene therapies for PWS have the potential to provide transformative treatments but much is still unknown in regards to the feasibility of a successful treatment. In this 53-minute video, Drs. Stormy Chamberlain and Jim Resnick give a brief overview o...
November 14, 2019 Read More

Topics: Research

Sensory Integration Therapy for PWS [2019 CONFERENCE VIDEO]

Most people with PWS struggle with sensory processing, either seeking or avoiding sensory input. In this 54-minute video, occupational therapists Ashley Waguespack and Jessica Boudreaux explain the sensory issues common to PWS, then dive into sensory...
November 13, 2019 Read More

Topics: Research

Two Moms Harvest Hope With 5K for PWS Research

While most of us spend Thanksgiving Day, relaxing, watching football or entertaining family, Rachael Fischer and Julie Foge rise before the sun to host the Harvesting Hope 5K run. Since 2015 these two amazing, determined women have hosted this family...
November 12, 2019 Read More

Topics: Stories of Hope

FPWR Announces Second Round of 2019 Grant Awards for PWS Research [VIDEO]

The Foundation for Prader-Willi Research announces our second round of Research Awards in 2019 totaling $708,577. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, h...
November 7, 2019 Read More

Topics: Research

2019 PWS Clinical Trials Panel [VIDEO]

The PWS Clinical Trials Panel presentation in the video below took place at FPWR’s 2019 Annual Research Symposium and Family Conference. The 90-minute session opens with a quick overview of the drug development process and is followed by presentation...
October 25, 2019 Read More

Topics: Research

DCCR Clinical Trial Should Continue, Says Data Safety Monitoring Board

Based on the review of data from more than 50% of patients enrolled, the Data Safety Monitoring Board has recommended continuing a phase III clinical trial of DCCR for PWS. The trial, called DESTINY PWS, is a randomized, double-blind, placebo-control...
October 18, 2019 Read More

Topics: Research

Stages of PWS Drug Development Overview [VIDEO]

Drug development is a long and costly process that can take up to 15 years and cost up to one billion dollars! In this 7-minute video, Dr. Theresa Strong discusses the stages of PWS Drug Development. Don't have time for the full presentation? We've c...
October 16, 2019 Read More

Topics: Research

Aaron Dunn and Family: Hugging Our Way to a 'Hopefull' Future

A special contribution by Amanda Dunn, Host of HopeFull: Funding a Cure for Prader-Willi Syndrome, Cincinnati, OH For our 5-year-old son Aaron, it all starts with a hug. Not just any hug. He has a signature, enthusiastic hug. It’s clear just how capa...
October 14, 2019 Read More

Topics: Stories of Hope

Phase 2 Study Results Published: Diazoxide Choline Controlled-Release

In 2015 FPWR co-funded a phase 2 study to investigate diazoxide choline controlled-release in patients with PWS. Results from the study were recently published in PLoS ONE and are summarized below.
October 1, 2019 Read More

Topics: Research

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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Our Mission

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Email: info@fpwr.org

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