KLS Foundation Discussion Forum

KLS First International Conference confirms Dr. Charles Chiu

2011-04-04T16:36:34-08:00

Dear Friends,

We are still receiving registrations for our first International KLS
Conference, August 12-14, 2011. We have over 150 people signed up to attend
representing over 60 groups with more registrations coming in every day. It
should be a fun and enlightening conference that you don’t want to miss.

In our last email we confirmed that Dr. Isabelle Arnulf from France will be
speaking on her project entitled. ” Long term consequences of the
Kleine-Levin syndrome: SPECT and cognition study in a large, controlled
cohort”.

We are now confirming that Dr. Charles Chiu, MD, PhD, from University of
California San Francisco will also be speaking at the confernce. The KLS
Foundation is funding Dr. Chiu’s research project entitled “Metagenomics
for Identification of Infectious Triggers of Kleine-Levin Syndrome” in
collaboration with Drs. Emmanuel Mignot at Stanford University and Joseph
DeRisi at University of California, San Francisco. Dr. Chiu has many titles:
Assistant Professor, Department of Laboratory Medicine and
Medicine/Infectious Diseases, Director, UCSF-Abbott Viral Diagnostics and
Discovery Center, Associate Director, UCSF Clinical Microbiology Laboratory,
UCSF Faculty, Biomedical Sciences. His research interests are in viral
detection and discovery, clinical diagnostics, pathogen detection
microarrays, deep sequencing, and metagenomics. Although Dr. Chiu works
relatively close to me, I have never had an opportunity to meet him and I am
looking forward to doing so at the Conference.

A grandparent of one of our KLS kids has written a poem for us about our
conference. We want to thank her and wish her grandchild good health.

OUR FIRST INTERNATIONAL K.L.S. CONFERENCE

THIS IS OUR FIRST INTERNATIONAL K.L.S.CONFERENCE,
AND WE NEED YOUR SUPPORT EVEN MORE,
THE SYNDROME IS RARE BUT DEVASTATES LIVES,
WE ARE DESPERATE TO FIND A CURE

THESE YOUNG K.L.S. SUFFERERS,
SLEEP THEIR TEENAGE YEARS AWAY,
IT IS SO UNFAIR, WE WATCH THEM SLEEP,
WHEN THEY SHOULD BE AT PLAY.

THERE IS SO MUCH MORE WE NEED TO DO,
AND WITH YOUR HELP WE’LL SEE IT THROUGH,
REMEMBER THE CONFERENCE IS AUGUST 12TH,
WE MUST FIGHT TO GIVE SUFFERERS BACK THEIR HEALTH

by Wendy Huntley

The breakout sessions are still being finalized. If you haven’t gone
online to voice your opinion of what you want to see at the conference, you
should do so now while we are still planning. The link to that survey is:

http://www.surveymonkey.com/s/SDXKRZ9

We are hoping to meet as many of our KLS “family” as possible.

KLS First International Conference confirms Dr. Isabel Arnulf

2011-03-07T12:59:13-08:00

From: melissa beckoff <melissabeckoff@gmail.com>
To: “stephen.maier@ey.com” <stephen.maier@ey.com>
Date: 03/01/2011 12:58 PM
Subject: Re: KLS First International Conference confirms Dr. Isabel Arnulf

what is the web site for the conference?

On Mon, Feb 28, 2011 at 4:26 PM, <stephen.maier@ey.com> wrote:
Dear Friends,

We are still receiving registrations for our KLS Foundation’s First
International Conference, August 12-14, 2011 at the Embassy Suites in San
Francisco, California. You already know about our keynote speaker, Dr.
Emmanuel Mignot, but maybe you need to know more about the other speakers.

Dr. Isabel Arnulf, of the Hospital Pitie-Salpetriere in Paris, France. When
I met Dr. Arnulf she was conducting a meta-analysis of the KLS literature
during a sabbatical year spent at Stanford University in Palo Alto,
California. This landmark publication is now available in the medical
journal called Brain.

(Brain. 2005 Dec;128(Pt 12):2763-76. Epub 2005 Oct 17. Kleine-Levin
syndrome: a systematic review of 186 cases in the literature.
Arnulf I, Zeitzer JM, File J, Farber N, Mignot Emmanuel,
Stanford University Center for Narcolepsy, Palo Alto, CA, USA)

Dr. Arnulf also co-authored:

Kleine–Levin Syndrome: A Systematic Study
of 108 Patients. Isabelle Arnulf, MD, PhD, Ling Lin, MD, PhD, Nathan
Gadoth, MD, Jennifer File, DO, Michel Lecendreux, MD, Patricia Franco, MD,
PhD, Jamie Zeitzer, PhD, Betty Lo, PhD, Juliette H. Faraco, PhD, and
Emmanuel Mignot, MD, PhD.

The KLS Foundation is also funding Dr. Arnulf’s research in France on her
project entitled. ” Long term consequences of the Kleine-Levin syndrome:
SPECT and cognition study in a large, controlled cohort”.

We hope to see many of you at the conference. We understand the time and
cost can be a limiting factor. Some members have been contacting others in
their regions to explore travelling together, discounts on group airfare and
potential fundraising to support the trip.

Additionally, we are still reviewing the survey results before we finalize
the breakout sessions. If you have not filled out the survey, you can do so
at our website or click on the following link:
http://www.surveymonkey.com/s/SDXKRZ9.

We are looking forward to meeting all of you.

KLS Foundation’s First International Conference – Featuring Keynote speaker Dr. Emmanuel Mignot

2011-01-27T13:04:59-08:00

Dear Friends,

Plans are continuing for the KLS Foundation’s First International Conference which will take place August 12-14, 2011 at the Embassy Suites in San Francisco, California.

Over 30 families have responded so far that they will attend the conference to hear the latest information on KLS research and to meet other families who are also living with KLS. All of the members of the Board of Directors are looking forward to meeting everyone and hearing their stories about how KLS has affected their lives. It will be an emotional and exciting time for all of us.

As Stanford University was the first research project funded by the KLS Foundation, we are particularly pleased that Dr. Emmanuel Mignot, an internationally renowned medical researcher and leader in pursuing scientific research on KLS, will be our keynote speaker. Many of you have helped this research by filling out questionnaires and giving blood samples. It will be wonderful to now hear some of the results of the research and to meet Dr. Mignot in person.

We are fine tuning some of the “breakout sessions” on relevant topics that many of you have asked for. The breakout sessions will be chaired by a member of the Board of Directors but will be designed to have active participation from all of the attendees. If you have not done so already you can use the link below to provide your thoughts on the topics to be covered at the conference.

KLS Conference Survey
http://www.surveymonkey.com/s/SDXKRZ9

If you haven’t made up your mind about coming to the Conference, just think about what you would be missing: that very important personal contact with another KLS person, research results directly from the researchers themselves, and KLS coping strategies.

You could make some wonderful lifetime friendships here.

KLS Conference information and registration
http://www.kleinelevin.com/kleine/levin/conference/attend_the_kls_foundations_first_international_conference/

Conference Survey

2010-08-22T15:20:54-08:00

There is a link to a survey on the conference information page. You can click on the link below. Thank you for your feedback as it will help us to taylor the information provided at the conference more effectively.

http://www.surveymonkey.com/s/SDXKRZ9

KLS Foundation’s First International Conference

2010-08-18T21:03:28-08:00

The KLS Foundation is pleased to invite anyone impacted by or interested in learning more about Kleine Levin Syndrome (KLS) to attend the KLS Foundation’s First International Conference for KLS in San Francisco, CA, USA on August 12-14, 2011. The three-day program is designed for medical professionals, people with KLS, their families and friends and will include an update on KLS research, discussions on dealing with KLS from various perspectives and the opportunity meet other families living with KLS. We hope that this meeting will bring together people living with KLS to be able to share their experiences.

See the KLS Foundation Home page for a link to more information and registration

KLS Segment will air on the Dr. Oz show on April 19, 2010

2010-04-13T18:05:23-08:00

The Dr. Oz show will focus on sleep disorders on April 19th. There will be a segment on KLS. The show airs on different channels and times in different cities. Please check your local listings or log onto the Dr. Oz website to see when it will air in your city.

Suggestions for KLS Foundation

2008-08-21T11:09:00-08:00

The focus of the KLS Foundation has been on providing information and support to KLS patients and families, helping to educate the medical community about KLS, raising funds, and promoting KLS research programs.

As the KLS Foundation approaches its 10 year anniversary we are interested in thoughts from the membership on ways that the Foundation could further assist patients, their families and the medical community.

Please feel free to post suggestions or to email responses directly.

Tanis Burnett’s Forum

2008-05-16T08:07:20-08:00

Here is the url to Tanis’s KLS Forum. It is another great place to connect with others with KLS.

http://klssupport.proboards100.com/index.cgi?board=kls

UK Documentary Searching for Contacts

2007-10-24T14:23:12-08:00

Earlier this summer during a business trip to the UK I talked in person with a local television producer who was doing research into a science series to be produced for British television, looking into rare and extraordinary neurological conditions, including KLS. The aim of the series is to take a serious, in-depth look into a wide range of these unusual syndromes, bringing them into the public’s consciousness through the life-stories of sufferers and the testimony from doctors and specialists. This type of program is in line with the Foundation’s mission to raise awareness of KLS generally and specifically in the medical community.

The documentary series including up to an hour on KLS has been funded and is moving into the production phase. The producers are currently looking for patients and families to talk with, especially anyone located in the UK. In addition they are hoping to have someone agree to be filmed during an episode. As a KLS patient (although I have been episode free for the last 6 year) I know that being filmed in an episode is not at the top of anyone’s list but from a video documentary perspective it does provide a more compelling story.

If you are interested in more information or interested in speaking with the producers please contact the foundation or you can contact Sam Campbell who is heading up the KLS portion of the documentary at “Campbell (LWT), Sam” Sam dot Campbell dot LWT at granadamedia dot com.

Research Funding

2007-08-06T09:18:38-08:00

The KLS Foundation is pleased to inform you that a supplemental $10,000 grant award towards the KLS research program lead by Emmanuel Mignot, MD PhD
at Stanford University has been approved by the KLS Foundation Board.