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FPWR Blog

New Investigational Drugs for PWS Offer Hope [2018 CONFERENCE VIDEO]

This blog is based on a presentation at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript below. You can also wat...

Topics: Research Blog

Using Games To Reduce Resistance To Change In PWS [2018 CONFERENCE VIDEO]

This blog is based on a presentation at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript below. You can also wat...

Topics: Research Blog

PWS Behavior Panel Shares Helpful Findings [2018 CONFERENCE VIDEO]

This blog is based on a presentation at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript below. You can also wat...

Topics: Research Blog

FPWR Announces Second Round of 2018 Grant Awards for PWS Research [VIDEO]

The Foundation for Prader-Willi Research (FPWR) announces a the funding of 11 Research Awards totaling more than $1,000,000. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and rel...

Topics: Research

Does Your Loved One With PWS Have Hyperphagia?

This guest blog was contributed by researchers Elisabeth Dykens and Elizabeth Roof of Vanderbilt University Does your loved one with PWS have hyperphagia? The answer isn't as simple as yes or no. Even if your loved one does not display the hallmark h...

Topics: Research

Town Hall Highlights PWS Research Achievements [2018 CONFERENCE VIDEO]

This blog is based on the Research Town Hall presented by the FPWR Research team at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've summar...

Topics: Research Blog

World’s Largest Newborn Screening Study for Four Rare Disorders

The Foundation for Prader-Willi Research and the Angelman Syndrome Foundation are funding the world’s largest newborn screening study for four rare genetic disorders: Angelman, Prader-Willi, Fragile X and Dup15q syndromes. The Victorian Medical Resea...

Topics: Research Blog

President Bill Clinton, Timothy Shriver Headline 2018 Live Life Full Gala

On Wednesday, October 10th, the inaugural Live Life Full DC took place at Army Navy Country Club in Arlington, VA. The event raised nearly $300,000 for PWS research and included guest speakers President Bill Clinton, Special Olympic Chairman, Tim Shr...

PATH for PWS Study Highlighted by National Organization for Rare Disorders

In celebrating five years of success with its comprehensive patient registry, the National Organization for Rare Disorders (NORD) has called special attention to FPWR’s PATH for PWS study. The study stems from improvements made to the NORD registry t...

Topics: News