Foundation for Prader-Willi Blog | Research

Temper outburst and disruptive behaviors are among the most challenging aspects of PWS, both for the individual with PWS and their family (Tsai 2018). Now, a promising study finds that four out of five participants had a reduction in temper outbursts after wearing a activated vagus nerve stimulation device.

We have exciting news to share! Soleno therapeutics has successfully enrolled 100 patients into their Phase 3 clinical study of DCCR. This is our second clinical trial which has completed enrollment in the past 2 months!

Several additional studies are still enrolling patients. 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.

In 2019, more than 11,000 donors supported PWS research and our mission to eliminate the challenges of PWS. We would like to thank all of our supporters: everything we do is made possible by you!

Here are just a few of our accomplishments from this past year.

In this 41-minute video, Dr. Elisabeth Dykens presents on the results of stress and the importance of self-care when parenting a child with special needs. Dr. Dykens is Professor of Psychology and Human Development at Vanderbilt Unversity and has done extensive research to understand PWS behaviors and develop strategies to improve mental well-being for the entire family dealing with PWS. She spearheaded the PWS Profile and Hyperphagia questionnaires. Click below to watch the video, or scroll down to read a transcript of the session.

In this 57- minute video, FPWR Executive Director Susan Hedstrom moderates as the FPWR research team provides an update on PWS research, achievements to date, and what we are doing to develop treatments for our loved ones with PWS. This session includes Q and A with conference attendees. Panelists include research team members Theresa Strong, Nathalie Kayadjanian, and Lauren Schwartz Roth and FPWR CEO John Walter. Click below to watch the video, or scroll down to read a transcript of the session.

Gillian Segall is an 18-year-old high school senior from Chicago, who loves to swim and take care of animals and also happens to have PWS. In this inspiring 15-minute interview, Gillian kicks off the 2019 FPWR Family Conference in New Orleans. Click below to watch the video, and scroll down for a full transcript.

In this 50-minute video, Theresa Strong and other FPWR research team members sum up the presentations given at the 2019 PWS Research Symposium. This overview provides a great synopsis of PWS research developments and work in progress, including PWS genetic therapy research, caring for people with PWS, managing clinical complications, newborn screening, drug development, pretend play, the PWS weight study, the Global PWS Registry, and clinical trials. Click below to watch the video. If you're short on time, scroll down for time stamps to find the portions you're most interested in.

In this 51-minute video, Dr. Katy Chambers helps understand the IEP (Individualized Education Plan) process and succeed in the IEP journey. Katy Chambers is a school principal of nine years and mom to Daniel (age 7), who lives with PWS. She shares her journey maneuvering the educational system from both sides of the IEP table, providing strategies that have been helpful as a parent, tips that help school staff better understand our children’s needs, and action plans that help ease the day to day stresses of monitoring the safety of our kids in the school setting. She leads an interactive session, building on the collective knowledge and experiences of parents in the room. Click below to watch the video. If you're short on time, scroll down to the presentation outline to find the portions you're most interested in.

Have you ever wondered what is the optimal diet for a person with PWS? We may not be able to answer that question just yet, but in this 29-minute video, Dr. Anne Scheimann from Johns Hopkins shares preliminary data from her study on the Modified Atkins Diet (MAD) for PWS and on important changes it may have in the microbiome. They review diet strategies for PWS, go over the specifics of the MAD study, and share results related to weight changes and the microbiome. If you're short on time, scroll down for time stamps to find the portions you're most interested in.

Whether you are new to PWS or a veteran, its important to stay current on standards of care. In this 57-minute video, Dr. Jessica Duis describes standards of care for both children and adults with PWS, covering topics such as supplements, oxytocin, constipation and gastroparesis, hormone replacement and growth hormone therapy. Click below to watch the video. If you're short on time, scroll down to the presentation outline to find the portions you're most interested in.