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Research Blog

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...

PWS Clinical Trials Alert: August 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.

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...

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 enrolling patients across the United States...

FPWR Conference Spotlight: Schaaf-Yang Syndrome Workshops

For the second year in a row, we’re looking forward to holding Schaaf-Yang Syndrome Workshops at the FPWR Family Conference. Please join me in welcoming SYS families again this year!

In 2017, families with a diagnosis of Schaaf-Yang syndrome (SYS) gathered with us to share research information and insights. Schaaf-Yang syndrome is a genetic disorder that’s caused by a disruption of the MAGEL2 gene on chromosome 15...

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...

Soleno Therapeutics Receives Fast Track Designation from FDA for DCCR for Treatment of Prader-Willi Syndrome

Soleno Therapeutics has received an FDA Fast Track Designation for diazoxide choline controlled-release (DCCR) for the treatment of PWS. Soleno is currently conducting a Phase III clinical trial of DCCR for the treatment of PWS. FPWR provided partial funding for the Phase 1 clinical trial.

NEW Tool to Help Measure Anxiety and Distress in PWS

This guest blog was contributed by Sara Cotter, CEO, Levo Therapeutics.

When developing new medicines to treat PWS, companies need to demonstrate meaningful improvements in PWS symptoms. For growth hormone, this was relatively straightforward because changes in height are easily measured. For behavioral or psychiatric symptoms in PWS, this becomes a far more challenging task.

As a community, we are so fortunate to have the Hyperphagia Questionnaire for Clinical Trials, also known as the HQ-CT...

PWS Registry Data: 88% Have Received Speech Therapy [INFOGRAPHIC]

Speech requires a complex combination of cognitive processing to quickly find and combine the right words, paired with the physical process of producing sounds. Since PWS impacts a variety of pathways that contribute to speech and sound development, it is not surprising that 88% of individuals within the Global PWS Registry have at some point received speech therapy...