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Foundation for Prader-Willi Blog | News (7)

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Meet Lisa Matesevac, FPWR's PATH for PWS Study Coordinator

FPWR is happy to announce that Lisa Matesevac has joined our team as our coordinator for the PATH for PWS Study, facilitating families’ involvement in the study. PATH for PWS will help us understand the medical complications that people with PWS expe...
October 24, 2018 Read More

Topics: News

PWS Clinical Trial Consortium and FDA Hold Key Meeting This November

The PWS Clinical Trial Consortium has recently been granted the unique chance to have a Critical Path Innovation Meeting with representatives of the FDA. The meeting will take place in November in Silver Spring, Maryland. This is a unique opportunity...
September 25, 2018 Read More

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Finally! We have treatments for PWS in clinical trials. How have we gotten here?

We are in an exciting time in PWS research. More clinical trials evaluating new drugs for PWS are taking place this year than in the last 10 years combined! For the first time ever, families will be able to choose from multiple clinical trials enroll...
August 14, 2018 Read More

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Theresa Strong Named to FDA Patient Engagement Collaborative

FPWR is thrilled to announce that Theresa Strong, our Director of Research Programs (and mom to Daniel, with PWS) has been selected to serve on the Patient Engagement Collaborative (PEC) by the U.S. Food and Drug Administration and the Clinical Trial...
August 2, 2018 Read More

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FPWR and Zafgen Partner for Natural History Study 'PATH for PWS'

FPWR and Zafgen have partnered to execute a four-year study that will advance the understanding of natural history and medical events in people with Prader-Willi syndrome. The PATH for PWS study (Paving the way for Advances in Treatments & Health...
July 12, 2018 Read More

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Interactive PWS Clinical Trial Finder Now Available!

In our continued commitment to provide information on PWS clinical trials, FPWR is pleased to share our new Interactive PWS Clinical Trial Finder. The latest addition to our clinical trials information page, this interactive map allows caregivers to ...
July 10, 2018 Read More

Topics: News

New PWS Explainer Video Describes Prader-Willi Syndrome In 3 Minutes

In just 3 minutes, FPWR's new video, What Is Prader-Willi Syndrome?, explains the basics of PWS — how it occurs, some of the challenges of PWS, and promising research into treatments. Narrated by Susan Hedstrom, Executive Director of FPWR and the par...
May 31, 2018 Read More

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Spring Cleaning? Put Your Efforts Towards Supporting PWS Research!

Looking for a quick FUNdraiser this spring? Grab a few friends and de-clutter for donations! Here's how to host a spring cleaning fundraiser for PWS research in 4 easy steps: 1. Ask supporters to donate items to your “garage sale” that they’d ordinar...
May 24, 2018 Read More

Topics: News

Phase 2 Study on Oxytocin for PWS Now Recruiting

A Phase 2 Study of intranasal oxytocin (IN-OXT) is now recruiting patients for an 8-week double blind study to evaluate the safety and efficacy in pediatric patients with Prader-Willi syndrome. Data from the study will add to the current knowledge th...
May 15, 2018 Read More

Topics: News

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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