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FPWR Blog

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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

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...
September 23, 2019 Read More

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...
September 18, 2019 Read More

Topics: News, Research

A Call To Action: Why PWS Clinical Trials Need to Be Full

Treatments for Prader-Willi syndrome are urgently needed. Today, we are closer than ever to the treatments for which we have been waiting, but we need all hands on deck to ensure our efforts can take us to the finish line. Here's why.
September 10, 2019 Read More

Topics: News

PWS Receives Specific Disease Code to Track Medical Care and Outcomes

The National Center for Health Statistics has designated a specific ICD-10 code for Prader-Willi syndrome (PWS). Previously PWS was included as one of number of genetic disorders ICD-10-CM code Q87.1, which contains a large group of genetic disorders...
September 9, 2019 Read More

Debunking the Myths of Clinical Trials

Nearly 500 people with PWS are needed this year to fill PWS specific clinical trials. These trials are incredibly important to the PWS community and are necessary in order to bring treatments for some of the most challenging aspects of PWS. Here, we ...
September 3, 2019 Read More

Pitolisant approved for treatment of excessive daytime sleepiness in adult patients with narcolepsy

Harmony Biosciences has announced that the U.S. Food and Drug Administration has approved WAKIX® (pitolisant) for the treatment of excessive daytime sleepiness (EDS) in adult patients with narcolepsy.
August 15, 2019 Read More

Topics: News

Our Challenges Are Opportunities To Be Better People, Says PWS Mom

A special contribution by guest blogger Laura Achlabach Laura shared her story via our Stories of Hope questionnaire.
August 2, 2019 Read More

Topics: Stories of Hope

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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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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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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Covina, CA 91723

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