The upcoming Research Symposium and Family Conference, hosted by the Foundation for Prader-Willi Research (FPWR), will offer the latest in research studies and promising treatments, and the opportunity to connect with the Prader-Willi syndrome (PWS) community.
Highlighted events include a special Oct. 4 session for parents whose child has been diagnosed with PWS within the past two years. In addition, on Oct. 5, a clinical trials panel will present information on current and future clinical investigations, and answer audience questions.
Also on Oct. 5, a team of experts in behavior, mindfulness, and occupational therapy will offer parents and caregivers a workshop about practical ideas for reducing stress and burnout.
Parents also are welcome to attend the PWS Research Symposium portion, which will present the latest breakthroughs in PWS studies, including genetics, molecular mechanisms, PWS models, metabolism, therapeutic development, clinical care, and trials.
Other symposium and conference sessions include: “Current Standards of Care for People with PWS,” in which an expert will share caregiving recommendations; “Research Outcomes: Behavior Evaluation and Family Support,” in which attendees will learn more about PWS and behavior, and; “Science Fireside Chat,” which will feature researchers presenting their latest work.
In the session “Motor Milestones — Tips for Feeding, Fine Motor and Gross Motor Development,” an occupational therapist will explain what families of newly diagnosed children can expect, and offer tools to support a healthy development.
In addition, in “IEPs for Student Success,” parents will learn how to work with school professionals. “At Home and School Behavior Strategies” will provide ways to manage behavior in both settings. And a form of occupational therapy, sensory integration therapy, will be discussed in the “Sensory Solutions for Everyday Struggles” session.
There also will be an “Interview with the FPWR Research Team” session, at which attendees will hear updates on FPWR research programs, achievements to date, and what the organization is doing to develop treatments.
The complete program schedule is available here. The event also will feature a meet-and-greet and welcome reception.
Featured symposium and conference speakers will include: Jessica Bohonowych, PhD, FPWR associate director of research programs; Jessica Boudreaux, occupational therapist; Patrice Carroll, a behavior specialist and director of PWS services, Latham Centers; Katy Chambers, principal, Ferguson Middle School; Elisabeth M. Dykens, PhD, psychology professor and director, Vanderbilt Kennedy Center for Research on Human Development; Nirbhay N. Singh, PhD, clinical professor of psychiatry and health behavior, Medical College of Georgia; Theresa Strong, PhD, FPWR director of research programs; and Ashley Waguespack, occupational therapist.