FPWR Blog

The recently published study "The characteristics of temper outbursts in Prader-Willi syndrome," sheds light on temper outbursts in Prader-Willi syndrome. This is a common challenge for many people with PWS. Drs. Rice, Einfeld and Woodcock, all very experienced researchers in the area of PWS, set out to develop a more comprehensive understanding of the characteristics of temper outbursts in PWS. In this study they explored the age of onset, frequency, duration and the types of situations that appeared to lead to a temper outburst. The researchers also questioned whether aspects such as age, gender, genetic subtype and onset of hyperphagia may affect temper outbursts.

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 related disorders and to that end, has awarded nearly $12,000,000 in research funding since 2003.

 “We’re very excited about FPWR”s newly funded research projects, which will provide critical knowledge about PWS and advance innovative, new therapies for our community”, said Dr. Theresa Strong, Director of Research Programs. “We are thrilled to be supporting a broad array of proposals, which span the research and development spectrum.”

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 hunger, there are likely other aspects of hyperphagia that are present. In this blog, we'll discuss some of  the nuance involved in hyperphagia in PWS.

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 summarized each presentation below.

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 can be downloaded here. 

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 Research Acceleration Fund this year also contributed $100,000 toward the project.

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 the help of their honorary committee members Kristin White, Dominque Deleage, and Rachel Petterson. 

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.

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. 

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. PWS research encompasses a wide range of disciplines and the research presented at the Symposium reached across the spectrum, advancing topics that are important to the PWS community,” said FPWR Director of Research Programs Theresa Strong, Ph.D.