Foundation for Prader-Willi Blog | Research

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.

In 1869, scientists isolated DNA for the first time. In 1953, they identified its double-helix structure. In the late 1970’s bone marrow transplantation was introduced, and entire immune systems (genes) were replaced as means to cure some blood cancers. In 2003, the human genome was sequenced.  FPWR’s own director of research programs, Theresa Strong, worked on that project with Dr. Francis Collins.

One milestone after another has been reached, giving us a deeper understanding into how our bodies and minds are constructed.

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2019 totaling $786,000. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, has awarded over $12,000,000 to research since 2003.

A new study is now enrolling people with PWS ages 13 to 30 years old and their caregivers to participate in a study to evaluate the use of Mindfulness-based intervention for the treatment of temper outbursts. A live webinar was conducted May 6th which shared details of the study, what you can expect if you choose to participate, and eligibility criteria for participation. The presentation is about 15 minutes in length, followed by 10 minutes of Q&A. 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 and slides from the presentation below.

Details on this study and a list of trial locations can be found on our clinical trial directory.   

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 watch the full set of conference videos on YouTube.

Researchers are making progress in evaluating the potential therapeutic benefit of oxytocin for PWS. Here, we review some of the most prominent research studies in this area and their implications for PWS.

This guest blog was contributed by Dr. Jessica Duis, Pediatric Geneticist at Vanderbilt University Medical Center and author of A Multidisciplinary Approach to the Clinical Management of Prader–Willi Syndrome.

One of the most common questions I hear is “Why did you decide to be a geneticist?” This is a relatively difficult question to answer. When I think about it, no one event comes to mind. It was a path set in motion from the time I was young and wondered how maternal environment impacted the outcome for a child. While there was a personal basis in this, it was not until later my curiosity transformed into a passion to make a positive impact on the lives of individuals with genetic disorders, particularly chromosome 15 disorders. I entered medicine to really make a difference and to me that meant make myself accessible and provide even the simplest of things to try to improve quality of life.

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.”