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
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.