International Pediatric Sleep Association

International Pediatric Sleep Association (IPSA) teamed up with Patient Support Groups to host a unique outward educational forum for patients and their families in Manchester UK. The programme ran on Wednesday, 5th December 2012 when the morning session was devoted to Narcolepsy and the afternoon session to Kleine-Levin Syndrome. IPSA -2012 is pleased to use the platform of this international congress to bring the latest in scientific and medical advances direct to those who have the greatest interest in the work. We are delighted to have...

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Help Find a Cure for KLS by Participating in the KLS Research Program

A blood sample taken from an individual with KLS who has not yet given blood for this study will tremendously help a research study underway. The Kleine-Levin Syndrome (KLS) Foundation has been working closely with Dr. Emmanuel Mignot and his sleep research lab at Stanford University in California for many years to discover the underlying cause and to gain a better understanding of KLS.  Dr. Mignot’s lab has been assembling a very valuable resource for KLS research:  a collection of blood samples, swabs and detailed KLS questionnaire data...

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LETTER TO THE KLS COMMUNITY

Dear KLS Foundation Members, The Kleine-Levin Syndrome (KLS) Foundation has been working closely with Dr. Mignot’s lab at Stanford University in California for many years to discover the underlying causes of KLS.  Many of you have already participated in this effort by completing questionnaires and submitting blood samples and we are beginning to see the results of these efforts.  If you have already participated in this study, we truly thank you for your help. There are several promising leads as to the underlying cause of KLS due to the...

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Stanford’s KLS Research Program Seeking Volunteers For A Viral Study

Stanford’s KLS Research Program Seeking Volunteers For A Viral Study Studies at the Center for Narcolepsy research (CNR) at Stanford University reveal that in 72% of the analyzed cases, the initial episode was preceded by symptoms of infection (i.e. flu-like syndrome, fever, cold, etc.).  Furthermore, in over half of the analyzed cases, patients reported the same flue-like symptoms at the beginning of subsequent KLS episodes.  The incidence of infection at the onset of KLS episodes seems far too frequent to be due to mere chance.  As...

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Major Kleine-Levin Syndrome genetic research funding awarded to Stanford University

National Institute of Health Grant The Stanford University Center for Narcolepsy and Hypersomnia Research has received funding from the National Institutes of Health to study the genetics of Kleine-Levin Syndrome (KLS).  This multi-year research grant is the first ever NIH-funded study on this disorder that manifests as devastating recurrent episodes of hypersomnia, cognitive derealization and hyperphagia. Research Goal This grant will provide the means to conduct a genome wide association study in individuals with KLS.  The research will be...

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Spring Montvale Plaza Fundraiser Raises Research Funds

Third KLS Fundraiser at The Montvale Plaza in Stoneham Massachusetts was another successful event.  About 300 friends and family of the Penny family, whose son Joe has KLS, came out to support the fundraiser and enjoy a spectacular night of dinner, dancing and an opportunity to win some wonderful prizes.  The donated items included landscaping services, Red Sox, Bruins, and Celtics tickets, gift certificates to restaurants.  The high quality of the much desired prizes kept the excitement of the night going.  The dance floor was filled all...

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