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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Being in a KLS Episode is like Being Taken Over

Being in a KLS Episode is like Being Taken Over

Being in a KLS Episode is like Being Taken Over Short-term memory loss is one of the many symptoms of KLS, but his episodes are something Steve Snow would rather forget. When they strike, the 20-year-old from Ontario, Canada, says that he becomes a completely different person. I had my first KLS episode in April 2007, a month before I turned 16. The episode actually ended on my 16th birthday, and I was diagnosed with the disorder a couple of months later. Before the diagnosis, everyone thought I was suffering from depression. Even I eventually...

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IT’S HARD BEING A KID WITH KLS

IT’S HARD BEING A KID WITH KLS

“IT’S HARD BEING A KID WITH KLS” Getting through her episodes is one thing, but Nicole Delien, 15, from Pittsburgh, PA, also has to deal with the socially isolating aspect of KLS. The 10th-grader has lost many friends over the years, and says that all she wants is a normal teenage life. My KLS symptoms began in April 2002, when I was six-and-a-half years old. But it wasn’t until two years later that I was officially diagnosed with the disorder. In the early days, my parents thought I was suffering from the flu or had some other...

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KLS NEED NOT DICTATE OR DEFINE YOUR LIFE

KLS NEED NOT DICTATE OR DEFINE YOUR LIFE

“KLS NEED NOT DICTATE OR DEFINE YOUR LIFE” Dani Farber, a 32-year old trader from Manhattan and board member of the KLS Foundation, has been episode-free since March 2004. He wants to share a message of hope to all KLS sufferers, and that is: KLS does end, and in the meantime, you shouldn’t let it stop you from pursuing your dreams. My first KLS episode struck in February 1995, just before my 16th birthday. I was in my sophomore year of high school. Unlike some KLS patients who suffer from KLS for months or years without knowing what...

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Recent scientific study published on sleep disorders and the subsequent news coverage

There have been several news stories in the popular press and circulating on the internet about the results of a recent scientific study about hypersomnia sleep disorders. These include Foxnews.com and Time (Health & Family)   The scientific paper was published November 14, 2012 in the journal Science Translation Medicine by David Rye et al from the Emory University School of Medicine.  The paper describes new and very interesting studies in 32 patients with various hypersomnia sleep disorders.  It provides some evidence for an...

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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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