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FPWR Blog

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...

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...

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...

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...

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...

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...

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.

Topics: Research

Saniona reports positive Tesomet Phase 2a clinical results in adolescent patients with Prader-Willi syndrome

In a phase 2a study involving 18 patients with PWS (9 adults, and 9 adolescents) Tesomet reduced body weight and improved BMI and reduced hyperphagia to very low levels. Tesomet appears to be highly efficacious in adult and adolescent patients and wa...

Topics: News

Evaluating Exercise Programs for People with PWS: New Study

The Foundation for Prader-Willi Research and the Prader-Willi Research Foundation Australia are jointly supporting a new research project, led by Dr. Nora Shields of La Trobe University, evaluating the effects of exercise training in individuals with...

Topics: News, Research