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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 Shriver, and Gold Medalist Special Olympic Swimmer, Meghan Michie.

The event was hosted by Mary & Ian Alberg with th...

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 that allow greater collaboration and engagement among stakeholders and experts to accelerate the pace of research for rare conditions.

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 experience, and what factors can decrease or increase their risk. 

2018 PWS Research Symposium: Abstracts Now Available

More than 150 scientists, clinicians, industry representatives and community members attended FPWR’s 2018 Research Symposium, making it one of the largest collaborative Prader-Willi syndrome (PWS) research meetings held to date. The single day program included 26 oral presentations and 22 posters representing all areas of science from discovery to preclinical and clinical research.

“The quality of science shared at this year’s meeting was remarkable...

Enrollment is Now Open for the PATH for PWS Study

The Foundation for Prader-Willi Research (FPWR) and Zafgen are pleased to announce that enrollment is now open for PATH for PWS, a natural history study intended to better understand serious medical events in Prader-Willi syndrome (PWS) and evaluate how PWS-related behaviors change over time. The data from this study is intended to inform the development and clinical trial design of potential new treatments for PWS...

PWS Clinical Trials Alert: September 2018

Several NEW PWS trial opportunities are now available. FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits while others can be completed remotely. Some trials are testing new drugs while others are intervention (non-drug) or natural history studies, like the PWS Weight Study described below.

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 for the consortium and the PWS community to engage in discussions with the FDA on the progress made in the last three years by the consortium to overcome clinical trial challenges in PWS.

Progress on 10 Recommendations from PWS Mental Health Research Workshop

Mental health and behavioral problems are a major challenge for individuals with Prader-Willi syndrome (PWS), with significant impacts on quality of life and independence for both the person with PWS and their family...

FPWR Conference Spotlight: You!

We’re in the home stretch before the 2018 FPWR Family Conference, and the only thing missing is you!

From Oct. 4-6 in Las Vegas, we’ll bring together families, caregivers, researchers and PWS experts for education, networking and community-building...

FPWR Conference Spotlight: PWS Applied Behavior Analysis

We hope that every parent walks away from the FPWR Family Conference with new information they can use in their everyday lives, and our two sessions on PWS Applied Behavior Analysis (ABA) will be packed with practical tools.

Board Certified Behavior Analyst Cindy Szapacs and Associate Behavior Analyst Tony Chambers will lead separate sessions on ABA focused on dispelling myths and education advoca...