Hundreds of LBD researchers, clinicians and families gathered in Las Vegas, NV in June for the 2019 International LBD Conference. Organized by the Cleveland Clinic with assistance from LBDA, it was the first international scientific meeting dedicated solely to LBD in nearly four years.
The first day started with a joint session of all attendees, featuring an inspiring presentation from Susan Schneider Williams, a fine artist, LBD advocate, and widow of Robin Williams. She offered insights gleaned from their journey through undiagnosed LBD before his death. Turning tragedy into a call action, she spent the past five years bringing greater attention to LBD. She put into words what many families experience about obtaining an LBD diagnosis, saying “The challenge is seeing the giant constellation that it is, instead of just some of its stars.”
The conference continued with a half day of presentations on the diagnosis and management of LBD and the second half was split into two tracks, one for scientists and the second for LBD families. The 3-day scientific track included sessions on clinical advances, imaging, biomarkers, genetics and epidemiology, neuropathology and controversies in the field. Highlights included a session covering recent efforts to define prodromal DLB, an overview of DIAMOND-Lewy toolkit, featuring validated questions to aid in the diagnosis of LBD, and a session featuring leaders of national and international LBD consortia across the world.
A surprise performance by REO Speedwagon’s lead singer, Kevin Cronin, delighted all who attended a poolside reception. Cronin shared with the audience that he had a family member living with LBD, bringing heightened appreciation to his appearance at the conference. He later posted a photo of the performance on Instagram saying, “My thoughts and prayers go out to any and all of you who are dealing with this disease either personally, or through a parent or loved one. I share your feelings of love, faith, and frustration. Much love to all.”
LBD families spent two days in a dedicated track tailored to their unique educational and support needs. The voice of those living with LBD was front and center, starting with a welcome message from two planning committee members, Don Kent who is a retired attorney living with LBD and his wife, Cynthia, also an attorney and retired judge. Later, a presentation on “A Life Re-examined” by Robert Bowles, a retired pharmacist with LBD, ended with a standing ovation. Laura Seydel was also on hand to talk about her journey with her father, Ted Turner, who is living with LBD. Other topics focused on disease management, coping with symptoms, the importance of participating in research, and the needs of LBD caregivers.
There was a special Q&A session with Susan Schneider Williams one evening, which included a 15-minute clip from a new documentary, Robin’s Wish. This film biography weaves together the untold love story of Robin William’s marriage to Susan, his untimely suicide, his misunderstood disease, and his universal experience of moving through pain in the search for healing and joy.