KLS Foundation is seeking volunteers

Dear KLS community, As you know, the Kleine-Levin Syndrome (KLS) Foundation is a volunteer-run patient advocacy group established 16 years ago to support patients, families and healthcare professionals dealing with KLS. The KLS Foundation Board is now seeking to expand our capabilities to better serve the KLS community and bolster research initiatives.  This is your opportunity to volunteer your skills and time, to a cause you care about. The KLS Foundation has begun a KLS related database of patient, community and professional contacts to...

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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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Announcing the Sixth Annual Run for Ryan

Spring is here and so is the 6th annual Run for Ryan, a Kleine – Levin Syndrome Fundraiser.  On Saturday April 14, a committee of dedicated volunteers headed by Donna White will sponsor the 6th annual Run for Ryan.  This is a special day in Lancaster, South Carolina that includes a county track meet that draws all the high school’s boys and girls, and helps raise awareness of KLS.  In addition to the track meet there will also be games for children, storytelling, face-painting, raffles, free blood pressure screening, a DJ, barbecue...

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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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KLS T-Shirts now available

KLS T-Shirts now available

The Kleine Levin Syndrome (KLS) T-Shirts are an easy and fun way to spread awareness and remember those who are suffering from KLS. KLS T-Shirts are only $22.50 and can be purchased via eBay by following the link below. http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=120770490368 100% of the net proceeds go towards KLS research. Thank you for your...

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Researchers awaken to Kleine-Levin Syndrome

Researchers awaken to Kleine-Levin Syndrome

Drs. Isabelle Arnulf, Yakov Sivan, Frederick Andermann, Geert Mayer, Ann-Marie Landtblom, Yu-Shu Huang, Emmanuel Mignot and Charles Chiu participating in a panel discussing treatment options during the KLS Conference. About 200 patients and their families are gathering in Burlingame August 12-14th, 2011 for the world’s first Kleine-Levin Syndrome conference – a three-day event that will focus on research into the disease and providing support for patients. For many, the conference will be their first opportunity to meet with others...

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