NEWS RELEASE: Kleine-Levin Syndrome Foundation Urges Lawmakers to Bring National Awareness to KLS research
Foundation Honors KLS community on Rare Disease Day by lobbying for inclusion in NIH Sleep Research Plan
Feb. 28, 2022 – WASHINGTON: The Kleine-Levin Syndrome Foundation today honors Rare Disease Day by calling for the inclusion of Kleine-Levin Syndrome (KLS) in the National Institutes of Health (NIH) biennial “Sleep Research Plan.” Including KLS in this publication and action plan will help build interest and funding for clinical research about this extremely rare disorder.
Only 1 in 1 million individuals has KLS, a complex neurological disorder characterized by long, recurring episodes of excessive sleep and derealization. During episodes that last days, weeks, or months, patients sleep most of the day and night and may experience derealization and significant behavioral changes including a reversion to childlike speech, compulsive eating, intolerance to noise and light and other unusual symptoms. Most patients experience brain fog that makes it difficult to distinguish between reality and dreams. KLS patients experience many cycles of illness over the course of a decade or more that rob them of their adolescence and wreak havoc on family life.
The cause of KLS is still unknown, and there are no known treatments. To date, research about KLS has been limited because KLS affects a very small population and is in most cases self-limiting.
“KLS shares some symptoms with other clinically rare but culturally well-known sleep disorders and mental health conditions, so there’s potential for groundbreaking research that would help desperate KLS patients and also other communities– but we need investigative partners and robust funding to realize these within-reach achievements,” said Kleine-Levin Syndrome Foundation President Steve Maier, who experienced KLS episodes from age 13-27.
This week, the Kleine-Levin Syndrome Foundation is participating in Rare Disease Week on Capitol Hill to build awareness about KLS amongst federal lawmakers. Foundation board members will meet with Members of Congress from New York and Maryland. A Times Square billboard will today feature a plea from the Kleine-Levin Syndrome Foundation for more KLS research.
“Our goal is patient advocacy,” said Kleine-Levin Syndrome Foundation Vice-President Dani Farber. “We are demonstrating to policymakers the impact of KLS on patients and their families and making clear the need for more federal funding for rare disease research, which could accelerate progress toward a cause, accurate diagnosis and treatment, and ultimately a cure for KLS.” Said Farber, who experienced KLS episodes from age 15-25.
The KLS Foundation is grateful to the EveryLife Foundation for Rare Diseases and its partners for convening the powerful voices of rare disease advocates from around the U.S.
The Kleine-Levin Syndrome Foundation is a home for patient and caregiver support, an educational hub for doctors and clinicians, and an incubator for research to find a cause and a cure for KLS. Support clinical research and learn how the KLS Foundation supports our community at www.klsfoundation.org.