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FPWR Blog

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

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 resou...
November 25, 2020 Read More

Topics: Research

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

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...
November 23, 2020 Read More

Topics: Research

PWS Clinical Trials Panel [2020 CONFERENCE VIDEO]

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 describin...
November 18, 2020 Read More

Topics: Research

Seeing What Can Be: Branden’s Story

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 ...
November 16, 2020 Read More

Topics: Stories of Hope

Adenotonsillectomy as a Treatment for Obstructive Sleep Apnea in PWS

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 s...
October 28, 2020 Read More

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

Jacquelyn first shared her experience through our Stories of Hope questionnaire. What emerged was a powerful portrait of resilience—hers, and her daughter’s.
October 26, 2020 Read More

Topics: Stories of Hope

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. W...
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

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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440 N Barranca Ave #3620
Covina, CA 91723

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