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What's Happening in PWS Research [2020 CONFERENCE VIDEO]

November 25, 2020

Join Dr. Theresa Strong and the FPWR Research Team to learn more about what is happening in PWS research. In this 68-minute video, the FPWR Research Team members summarize highlights, recent findings and the latest on PWS research and available

PWS Registry Data: Impact of COVID-19 on PWS Families [INFOGRAPHICS]

November 23, 2020

Originally published in August 2020, this blog has been updated with significant new data. The Global PWS Registry launched a survey this summer to capture the impact of COVID-19 on PWS families, and how our community is navigating this unprecedented

PWS Clinical Trials Panel [2020 CONFERENCE VIDEO]

November 18, 2020

PWS clinical trials are taking place around the world to help us understand Prader-Willi syndrome and investigate new treatments. In this 60-minute video, Dr. Strong summarizes the drug development pathway, followed by trial representatives describing their studies and explaining what

Seeing What Can Be: Branden’s Story

November 16, 2020

A special contribution by guest blogger Joni Augustine. When Branden was born 30 years ago, there weren’t nearly as many resources or support networks for families affected by Prader-Willi syndrome (PWS). Doctors told me he would never walk and that

Adenotonsillectomy as a Treatment for Obstructive Sleep Apnea in PWS

October 28, 2020

High quality sleep is essential to a child’s growth and development. Obstructive sleep apnea (OSA) occurs when the muscles in the airway relax during sleep, causing a narrowing or closure of the airway, with temporary interruptions of breathing and sleep

I’ve Spent My Life Preparing For This: PWS Mom Shares Sources of Strength

October 26, 2020

Jacquelyn first shared her experience through our Stories of Hope questionnaire. What emerged was a powerful portrait of resilience—hers, and her daughter’s. From the beginning, her daughter has exceeded expectations. She has met milestones, faced challenges head-on, and continued to

Comparison - Angelman, Dupe15q, Prader-Willi syndromes

November 15th Is International 15q Day

October 22, 2020

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. Prader-Willi, Angelman, and Dup15q syndromes are all distinct neurodevelopmental disorders that are caused by changes within

With PWS Research, There Is Renewed Hope for Peyton

October 20, 2020

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

Changes In Weight and BMI In Adolescents and Adults with PWS

September 22, 2020

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. The full

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