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
Dear KLS Community, We hope you are having a great start in the New Year! We have some important and exciting news to share with you. We have awarded a $36,456 grant to Dr. Emmanuel Mignot of Stanford University for research on “GWAS and Exome Sequencing in KLS.” This grant will be used to support studies including the further genotyping of individuals with KLS to confirm and extend initial lab findings. Another goal of the grant is a study to sequence the DNA of select KLS families. To learn more about the research, click here:...read more
We have been informed that the Stanford University KLS research group has sent out upon request approximately 30 blood sampling kits to participants in the KLS conference, but has not yet received any of them back. A new KLS study is about to begin and it is very important to have these blood samples as soon as possible to be included in the study. We would also like to help by determining if there is an issue with people receiving or returning the kits. If you were expecting a kit and did not receive one, or if you received one and have...read more
KLS Foundation Awards Grant to Emmanuel Mignot of Stanford University for Genetic Research January 6, 2016 – The Kleine-Levin Syndrome (KLS) Foundation, a patient advocacy group promoting research and supporting families dealing with KLS, today announced that the KLS Foundation has awarded Professor Emmanuel Mignot of Stanford University (Palo Alto, California) a research grant to advance studies investigating the genetics of KLS. This grant will be used to support studies including the further genotyping of individuals with KLS to confirm...read more
Steve Maier, President of the KLS Foundation, kicks off the 2015 International Conference. See the PDF link and video below. PDF Link: KLS Foundation 2015 International Conference – Kickoff – Steve Maier KLSF Presidentread more
Professor Isabelle Arnulf PhD MD, Keynote Speaker, provides a very comprehensive 2015 update on Kleine-Levin Syndrome to include: KLS diagnosis criteria, long episodes, brain functional imaging, long term cognitive functioning and treatments. See the PDF link and video below. PDF Link: Kleine-Levin Syndrome Update 2015 – Professor Isabelle Arnulf PhD MD ...read more
Dr. David Rye, MD, special guest speaker, gives a talk about his research concerning Hypersomnia Conditions. Subjects include Kleine-Levin Syndrome, Idiopathic Hypersomnia, and Narcolepsy. See video below.read more
Ann Blackmon, special guest speaker, presents a check to the KLS Foundation in memory of Ryan McKinney and shares about the Running For Ryan Fundraiser. See video below.read more
Dani Farber, KLS Foundation Board Member, presents a global research update on KLS. See the PDF link and video below. PDF Link: KLS Research Update – Dani Farber & Neil Farber PhDread more
Caron Krieger, KLS Foundation Board Member and Co-Founder of KLS Support UK, shares about how KLS Support UK came to be and it’s attained success. See the PDF link and video below. PDF Link: KLS Support UK – Caron Krieger KLSF BODread more
Sara G. Khaki, Esq., speaks about Social Security Disability Benefits and gives tips. See the PDF link and video below. PDF Link: Social Security Disability Benefits – Sara G. Khaki Esqread more