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FPWR Blog

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Return of Results: CARE-PWS by Levo Therapeutics [2020 CONFERENCE VIDEO]

In this 36-minute Return of Results session, David Ryman of Levo Therapeutics provides insights into the Phase 3 clinical trial of carbetocin, including next steps for making the drug available to treat hyperphagia and anxiety behaviors in PWS. This ...
December 15, 2020 Read More

Topics: Research

Soleno Therapeutics Provides Regulatory Update on DCCR for the Treatment of Prader-Willi Syndrome

Soleno Therapeutics continues to progress their novel therapeutic, DCCR, forward as a potential treatment of hyperphagia in PWS. On November 12th, Soleno met with the FDA to discuss the best path forward for DCCR. In their most recent press release, ...
December 11, 2020 Read More

FPWR Funded Researcher Mailing List

Our FPWR funded researchers are working hard to eliminate the challenges of PWS. How about spreading some cheer this season by sending a holiday card thanking them for their work? Mailing addresses for FPWR's currently funded researchers are below or...
November 30, 2020 Read More

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

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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