Held October 4 – 6, 2018 in Las Vegas Nevada, the Foundation for Prader-Willi Research Annual Research Symposium and Conference started with the Research Symposium during which numerous abstracts and preliminary results were presented from the podium. Most evidence was findings from pre-clinical phase research and phase 2 trials. All evidence was very promising and many trials are anticipated to move into phase 3 research in the near future. The clear takeaway? There is much exciting research that will soon be moving towards active recruitment for larger clinical trials.
The general conference started on Friday and opened with a session for new families wherein attendees had an opportunity to meet and interact with other parents of children with PWS. General sessions began on Friday afternoon and covered a variety of poignant issues for families, including a behavioral experts panel and open forum and an update on the research and work of the foundation. Breakout sessions followed and were more specific to particular topics. Later, there was an opportunity to mingle with other organizations present who also support and educate families. PWSA (USA) was represented by Steve Queior, CEO, and Mary Burr, Medical Coordinator, who shared literature and other helpful tools with families. There was a welcome reception and dinner for families and speakers on Friday after the conclusion of the sessions.
Saturday was a day to update parents on specific clinical trials and recruitment efforts as well as giving them an opportunity to speak with and listen to presentations on a variety of selected topics from applied behavior analysis to nutrition.
After the conference many families stayed and did some sightseeing and continued peer collaboration. Overall the conference was well received by all participants many of whom were full of excitement regarding the future of research in individuals with Prader-Willi Syndrome.
Submitted by: Mary Burr, Medical Coordinator