Neal M. Farber, PhD, co-President of the KLS Foundation visited with Prof. Emmanuel Mignot and his research team at Stanford University on October 15, 2009 to discuss the status of the KLS research program underway in his lab and to learn how the Foundation can help these research efforts.  Emmanuel Mignot, MD, PhD is Professor of Medicine, Stanford Medical School, Director of the Stanford Center for Narcolepsy and the recipient of a multi-year NIH grant to study KLS.

Dr. Farber was told about the multiple lines of investigation ongoing in the lab.  He met with several scientists involved in KLS research, including the new KLS Clinical Research Coordinator Tom Rico.  The research goal is to understand the cause of KLS and ultimately find an effective treatment.  The KLS Foundation has played an important role in the research to date and Dr. Mignot discussed how individuals who have been diagnosed with KLS can help bolster the research efforts by participating in one or more of the research studies underway.

DSC01752Caption: Dr. Neal Farber of the KLS Foundation visiting with Prof. Emmanuel Mignot, Clinical Research Coordinator Tom Rico, and Postdoctoral Research Fellow Karin Weiner.  Other members of the Stanford KLS research team not shown: Dr. Ling Lin and Dr. Juliette Faraco

There are several research projects underway, each exploring a different possible cause of KLS.  Every project critically requires samples for testing from individuals with KLS at different stages.

One research project is seeking to determine if there is a genetic predisposition to KLS.  For this study, individuals diagnosed with KLS and their families are asked to complete a detailed questionnaire and submit a blood sample.  The Stanford University lab facilitates this by providing easy to use blood sampling kits and return mailers.  To date several hundred blood samples have been collected and processed, but many more blood samples from individuals who have been diagnosed with KLS are needed.  This blood sample can be collected at any time, between episodes or even if your last KLS episode was in a distant past.

A second research project is investigating if there is a relationship between KLS and a virus.  For this study, cotton swabs of the throat and nose are needed from individuals with KLS at the beginning of a KLS episode, preferably when there are signs of a typical viral illness.  Again, the lab provides a sampling kit and return mailers.  Previously the samples needed to be returned to the Stanford University lab frozen and packed in dry ice.  To make it easier for families to participate in this very important study, the cotton swab samples can now simply be returned at room temperature using overnight mailers.

A new third very exciting new line of investigation needs blood samples from individuals with KLS both during and after a KLS episode.  For this study, families are asked to arrange for a blood sample to be withdrawn at the beginning, near the end and about   1-2 months after the end of an episode.

These are all very important studies and the KLS Foundation is pleased that Prof. Emmanuel Mignot is so committed to this research.  We can all help by participating in providing the necessary samples to enable these investigations.

For further information about participating in the KLS research program, please contact:
Tom Rico, Clinical Research Coordinator
Center for Narcolepsy & KLS Research
Department of Psychiatry and Behavioral Sciences
Stanford University School of Medicine
Tel: (650) 725-1773
Fax: (650) 725-4913

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