The HF is celebrating its fifth anniversary this year, but did you ever wonder who came up with the idea for the HF? The answer is David B. Rye, MD, PhD, of Emory University. In addition to Dr. Rye’s pioneering research on idiopathic hypersomnia (IH), Dr. Rye recognized that people with IH deserved a foundation dedicated to their unmet needs, and thus he encouraged stakeholders to form the HF. For his vision and his dedication to the IH community, Dr. Rye received the HF’s first-ever Impact Award at our Patient Education Meeting in Seattle on June 29.
Dr. Rye, a professor of neurology at Emory University’s School of Medicine and the director of research for Emory Healthcare’s Program in Sleep Medicine, is an internationally-recognized expert in IH, narcolepsy and related disorders of excessive sleepiness. He is also an expert in movement disorders in sleep, particularly restless legs syndrome (RLS). In 2007, Dr. Rye was part of the international team that identified the first gene variant associated with RLS, a neurological condition characterized by periodic leg movements in sleep and the irresistible urge to move the legs. He also led a team that linked RLS to high blood pressure and related vascular risks.
From his work with the RLS community (and the resulting RLS Foundation), Dr. Rye realized that the IH community, too, would benefit from a nonprofit organization whose mission was to improve the lives of people with this chronic neurological condition. Accordingly, he encouraged three people who shared his vision and his desire to help the IH community – Jennifer Beard, Catherine Murray and Catherine Page-Rye – to form a nonprofit organization whose purpose was to support people living with IH and to push for more research into IH. In 2014, Dr. Rye’s vision became reality, when these three women formed the Hypersomnia Foundation.