Kleine-Levin Syndrome Foundation urges lawmakers to raise awareness of KLS research

WASHINGTON, February 28, 2022 /PRNewswire/ — Kleine-Levin Syndrome Foundation honors Rare Disease Day today by calling for the inclusion of Kleine-Levin Syndrome (KLS) in the biennial National Institutes of Health (NIH) “Sleep Research Plan”. The inclusion of KLS in this publication and action plan will help generate interest and funding for clinical research in this extremely rare disease.

Only 1 in 1 million people suffer from KLS, a complex neurological disorder characterized by long, recurrent episodes of excessive sleep and derealization. During episodes that last for days, weeks, or months, patients sleep most of the day and night and may experience significant derealization and behavioral changes, including a return to childish speech, compulsive eating, intolerance to noise and light and other unusual symptoms. Most patients experience brain fog which makes it difficult to distinguish between reality and dreams. KLS patients experience many disease cycles over a decade or more that rob them of their teenage years and wreak havoc on family life.

The cause of KLS is still unknown and there is no known treatment. To date, research on 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 disorders, so there is potential for groundbreaking research that would help desperate KLS patients and also other communities – but we need of investigative partners and solid funding to carry them out within – achieving achievements, “ said the president of the Kleine-Levin Syndrome Foundation Steve Mayerwho experienced episodes of KLS between the ages of 13 and 27.

This week, the Kleine-Levin Syndrome Foundation is participating in Rare Disease Week on Capitol Hill to educate federal lawmakers about KLS. Members of the Foundation Board will meet with members of the Congress of new York and Maryland. A Times Square billboard will feature a plea from the Kleine-Levin Syndrome Foundation for more research into KLS today.

“Our goal is to defend the rights of patients”, said the vice president of the Kleine-Levin Syndrome Foundation Dani Farber. “We demonstrate to policymakers the impact of KLS on patients and their families and clarify the need for increased federal funding for rare disease research, which could accelerate progress toward a cause, diagnosis, and treatment. accurate, and ultimately a cure for KLS.” Says Farber, who experienced episodes of KLS between the ages of 15 and 25.

The KLS Foundation is grateful to the EveryLife Foundation for Rare Diseases and its partners for bringing together the powerful voices of rare disease advocates from across the United States

The Kleine-Levin Syndrome Foundation is a home for patient and caregiver support, an educational center for physicians and clinicians, and a research incubator to find a cause and cure for KLS. Support clinical research and find out how the KLS Foundation supports our community at www.klsfoundation.org.

SOURCE Kleine-Levin Syndrome Foundation

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