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FPWR Blog

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November 15th Is International 15q Day

Together, the Foundation for Prader-Willi Research, Angelman Syndrome Foundation and Dup15q Alliance are raising awareness of the similarities between Angelman, Dup15q, and Prader-Willi syndromes.
October 22, 2020 Read More

Topics: Research

With PWS Research, There Is Renewed Hope for Peyton

On April 18th, 2012, our beautiful daughter, Peyton, was born. At 5lbs, 7oz, she was little, but everyone thought she was just weak and that she would get stronger as she grew. Peyton was not strong enough to nurse and she struggled with a bottle. We...
October 20, 2020 Read More

Topics: Stories of Hope

Changes In Weight and BMI In Adolescents and Adults with PWS

In this 6-minute video, Drs. Theresa Strong and Caroline Vrana-Diaz review data and findings from the PWS Weight Study conducted by the Foundation for Prader-Willi Research. This study has been published in the Orphanet Journal of Rare Diseases.
September 22, 2020 Read More

Topics: Research

Top 10 Reasons to Attend the 2020 Virtual PWS Family Conference

The FPWR Family Conference takes place October 6-9, and this year, it's virtual and free. Here are the top 10 reasons you need to be there!
September 14, 2020 Read More

Topics: News

FPWR and PWSA-USA Partner for Telehealth Needs Assessment

FPWR and the Prader-Willi Syndrome Association | USA (PWSA | USA) have partnered to conduct a study to measure interest in telehealth as a way of increasing access to care from Prader-Willi syndrome specialists. In addition, the project aims to bette...
August 12, 2020 Read More

Topics: Research

We Celebrate Our Life with PWS

A special contribution by guest blogger Jennifer Lee Three little words changed our lives forever: Prader-Willi syndrome. Jhett was 23 days old. He had spent his life to this point in the NICU. We knew we were testing for PWS, and due to my research ...
August 11, 2020 Read More

Topics: Stories of Hope

Carbetocin for PWS: Phase 3 Clinical Trial Results Announced

Today, Levo Therapeutics announced the promising results of their Phase 3 Clinical Trial of carbetocin for treating symptoms of PWS.
August 6, 2020 Read More

Topics: Research

Facial and Voice Processing Issues Affect Social Interactions in PWS

Children and adults with PWS frequently show impairments in their social interactions. New research on how people with PWS process visual and auditory cues could lead to social interventions that help.
July 31, 2020 Read More

Topics: Research

Hip Dysplasia in Babies with PWS May Not Need Aggressive Treatment

A new study looking at the long-term consequences of early hip dysplasia does not support an aggressive approach to treating hip dysplasia in babies with PWS. The paper provides useful guidance and suggestions for physicians who are evaluating babies...
July 22, 2020 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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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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