Most published articles on KLS in the medical and scientific literature are reports of one or two KLS cases by an attending physician. While helpful in confirming and sometimes reporting new observations, these ‘case reports’ usually do not significantly contribute to a better understanding of KLS.
In the last few years, there have been a few more informative studies and review articles based on observations and conclusions from a larger cohort of KLS cases.read more
As a result there is very little incentive for researchers and pharmaceutical companies to invest in KLS research.
Please consider donating today! Contributions from individuals are critical to the ongoing success of the KLS Foundation’s efforts to educate, support families and find a cure for KLS.
Thank you for your support!read more
You may want to use this list as a starting point for your search for a doctor. Finding a doctor or other health professional that is right for you is a personal process that can take time.
It is important to find someone you feel you can speak with openly and honestly. Even if your doctor does not know much about Kleine-Levin Syndrome (KLS), he or she should take the time to learn about it. As you search for a health care professional, keep in mind that you have certain rights no matter who you are, what challenges you are facing, or how much money you have. You have a right to:read more
Kleine-Levin Syndrome Foundation Fundraiser Benefiting: Nick Smith and all adolescents living with KLS All Proceeds go to Awareness and Research for the Kleine Levin Syndrome Foundation When: Saturday, July 19, 2014 Where: Indian Lake Country Club 10502 E 75th Street, Indianapolis, IN 46236 GOLF SHOTGUN Begins: at 1:30pm – arrive at 12:30 pm Cost $35.00 per person– includes Golf/Cart/Box Lunch/Drinks $45.00 includes above PLUS dinner/drinks Prizes awarded [longest drive, closest to pin, longest put] immediately after golf...read more
Kleine Levin Syndrome 10K Run “For many young people with Kleine Levin Syndrome it feels like time travelling – their last clear memory is being at a certain place doing whatever normal people do and suddenly they wake up somewhere else, they have no idea time has travelled forward and they have missed days, weeks, months or even a year! The rest of the world moves on without them. You live with the frightful reality that an episode may occur with devastating effects on the adolescent education, the start of their careers, their...read more
“I have KLS and I just became a Mom” If you think that becoming a parent is out of the question if you have KLS, Nathalie Hoyland will prove you wrong. The 30-year-old careers advisor from the UK was diagnosed with the disorder at 25, but she just gave birth to a daughter and is enjoying every minute of being a mom. My KLS symptoms began when I was 17, but I wasn’t officially diagnosed until just after my 25th birthday. Growing up with KLS was very frustrating. It basically caused me to put my life on hold every few months, and as a...read more
Nov 15, 2011 00:02 By Mirror.co.uk “It should have been the best time of her life, starting college, making new friends and hanging out with her gorgeous new boyfriend. But this time last year, when Bethany-Rose Goodier went to bed and fell asleep, she didn’t wake up the next day. Or the day after that….” Click on the following link to read the full article: “I missed Christmas and my birthday when I fell asleep for six...read more
TORONTO - “There was nothing sweet about Kaitlyn Terrana’s 16th birthday. And she has virtually no recollection of her last birthday, her 17th, either. She slept through both of them…” Read full article here: Kaitlyn Terrana KLS Article KLS Video of Kaitlyn Terrana: The Inside Story: Hamilton teen sleeping her life...read more
“Coming up, they put their daughter to bed with what they thought was the flu but then she didn’t wake up…” See KLS Video below featuring Taryn...read more
“Once upon a time, there was a girl who slept and slept and slept but this is not a fairy-tale…” See video below featuring Louisa Ball and her battle with Kleine-Levin Syndrome (KLS): Article featuring Louisa Ball: Article: The real-life Sleeping Beauty who snoozes for TWO weeks at a...read more
“I’VE BEEN IN A KLS EPISODE FOR THREE YEARS NOW” Thirty-one-year-old Simon Storey from Middlesbrough, England, is trying to get through an episode that began when he was 28. He talks about what his life’s been like all this while, and how his partner, family and KLS friends are helping him get through the ordeal. My KLS symptoms began in May 2006, when I was 26 years old. I was a university student at the time. I woke up one morning after a night out with friends, feeling quite odd, like nothing around me was real. I’d been suffering...read more
Each KLS episode is different –they evolve over time. Episodes can range from mild to severe! We have heard of KLS patients being able to function during some episodes and at times they are not able to function. If you are able to function during an episode make sure you have your caregiver around you and support in place! Read Brittaney Capozzi’s inspiring story by clicking on the following links: High school gymnast shines in competition despite rare neurological disorder Ailing Athlete Helps PA Gymnasts Return to Top of Heap Video:...read more
The Running for Ryan KLS Fundraiser was held on April 5th, 2014! The event is held in memory of Ryan McKinney, who died of cardiac arrhythmia, which was caused by a missed diagnosis and over medication of KLS. Read the following article here: Running for Ryan Article If you would like to support our KLS research efforts to find the cause and cure of KLS, please consider donating here: http://klsfoundation.org/donations/ We appreciate your continued support!...read more