Kleine Levin Syndrome (aka KLS) KLS is a very rare; currently incurable disorder that only one in a million people around the world suffer with.

KLS is characterised by recurrent bouts of excessive sleep. It usually starts in teenage years but can occur in younger
children and adults. Each episode can last for just a few days, or stretch into weeks, and sadly, even months.

With these episodes, daily activities come to a grinding halt; sufferers are not able to care for themselves, attend school or work and cease to function in any normal sense.

This is how our daughter describes it as a
sufferer:

“Over a few days I effectively lose myself, gradually my brain slows down and my memory disintegrates. I am confused and
begin to become excessively tired, it’s as though I’m living in a dream/nightmare, an incomprehensible feeling, it’s terrifying at this stage to know you are going to lose yourself and your life as you know it for a while but without knowing how long until you get it all back. Then comes a point where everything is so confused and you sacrifice yourself to sleep for hours, a sleep filled with nightmares. When you are awake you’re almost watching yourself through a glass window but the person you’re watching is a completely different person
from the one you are when normality returns. Then, I’m left with little memory of what happened, two months can feel like two days.”

This is how KLS is described by Dr Guy Leschziner, a Consultant Neurologist at Guy’s Hospital in London: “Young people are at a crucial point in terms of their education, in terms of their social life, in terms of their family life. Due to its unpredictability it's a very very devastating condition”.

Because so few people suffer with this desperately debilitating illness there is no financial incentive for researchers or pharmaceutical companies to spend any time or money trying to find a cure
and as a result, there is no effective treatment for it.

My wife and I are trying to do as much as we can to raise awareness of this awful illness. We also want to do something practical
and to this end will be cycling this summer from Land’s End to John O’Groats! The journey will be almost 1200 miles and will take approximately four weeks. 
We have a combined age of 115, so don’t expect any record breaking, but we're determined to cover the whole distance smiling :).

We are looking for sponsors and or donations with all proceeds going to help and support the families and sufferers of KLS. All proceeds will go to KLS Support UK and The KLS Foundation.

KLS Support UK https://kls-support.org.uk/articles/10  a small charity offering help and support to those affected by Kleine-Levin Syndrome. The KLS Foundation https://klsfoundation.org/ a US based charity that supports scientific research, to find effective treatment and ultimately find a cure for Kleine-Levin Syndrome.

We would be so grateful if you think you can help us with our efforts to find a treatment, in any way!