NARCOLEPSY ORGANIZATIONS AND INFORMATION

Updated August 5, 1999

MEDIA ALERT!

STANFORD FINDS NARCOLEPSY GENE!


| Narcolepsy Network | Cure Narcolepsy Now | Narcolepsy Institute | National Narcolepsy Registry | Stanford Center for Narcolepsy | Volunteer Blood for Narcolepsy Research | Center for Narcolepsy Research | Narcolepsy & Cataplexy Foundation of America (NCFA) | Florida Narcolepsy Association |Suggested Reading | Articles & Resources | Modafinil/Provigil |

See our updated articles about narcolepsy on the new Stanford Sleep and Dreams website.

Here is also an egroups discussion group on narcolepsy for people who experience excessive daytime sleepiness, cataplexy, hypnagogic hallucinations and other symptoms of narcolespy. (9/21/98)

Life of a Sleepy Person IV Conference in March of 1999!

What is narcolepsy?

The cause of narcolepsy is unknown. The neurological disorder is characterized by excessive sleepiness that is typically associated with cataplexy (a sudden loss of muscle tone and paralysis of voluntary muscles that is associated with a strong emotion) and other REM sleep abnormalities such as sleep paralysis, (Imobility of the body that occurs in the transition from sleep to wakefulness.) and hypnagogic hallucinations ( pre-sleep dreams).

What are the symptoms?

Polysomnography shows one or more of the following:

How serious is this disorder?

Narcolepsy is not a fatal disorder in itself. Narcolepsy has a great impact on functionability.  Due to the excessive sleepiness, narcoleptics may fall asleep while driving and that is sometimes fatal. There are different levels of severity. Some with this disorder may have mild sleepiness or rare cataplexy (less than once per week). Others may have moderate sleepiness or infrequent cataplexy (less than daily). Yet others may experience severe sleepiness or severe cataplexy (daily). Narcolepsy is usually treated with a medication to improve alertness and an anti-depressant that helps control cataplexy. In February 1999, a new drug, Provigil (Modafinil) is to be distributed for use in controlling sleepiness in narcolepsy.

NARCOLEPSY NETWORK, INC. (Main Office)
Robert L. Cloud, Esq., President
277 Fairfield Road
Suite 310B
Fairfield, NJ 07004
Tel: 973-276-0115
Fax: 973-227-8224
Contact Person: Howard Wolfe, Executive Director
E-mail: narnet@aol.com
Narcolepsy Network Web Site
Newsletter: The Network (quarterly)

What they offer:

A national information and support network for people with narcolepsy.  They will send an information packet, including a brochure, list of educational materials and membership form.

Educational materials that are available:

They can refer you to support groups in your area or tell you how to set up a group.

Membership is $25 a year, and includes a resource guide and the quarterly newsletter: THE NETWORK.  The network's theme is C.A.R.E.: Communication, Advocacy, Research and Education.

CURE NARCOLEPSY NOW
National Sleep Foundation (NSF)
729 15th Street N.W., 4th Floor
Washington, D.C. 20005
Tel: 202-785-2300
Fax: 202-785-2880
Contact person: Dr. Michael Thorpy (By e-mail below)
E-mail: thorpy@aecom.yu.edu (Dr. Michael Thorpy)
Internet Address: http://www.cloud9.net/~thorpy/NARCO.HTML
Newsletter: None

What they offer:

Cure Narcolepsy Now is involved in the search for the cure of narcolepsy.  Their aim is to encourage communication between researchers that will ultimately lead to a cure for narcolepsy.  The web site offers information on the genetics of narcolepsy, true stories, individuals who make a difference, and activities sponsored by Cure Narcolepsy Now.  Call or e-mail for more information.

NARCOLEPSY INSTITUTE
Meeta Goswami, M.P.H., Ph.D., Director
Montefiore Medical Center
111 E. 210th Street
Bronx, NY 10467
Tel: (718) 920-6799
Fax: (718) 654-9580
Contact person: General staff
E-mail: none
Internet address: none
Newsletter:

What they offer:

Counseling, information about narcolepsy.

NATIONAL NARCOLEPSY REGISTRY ANNOUNCED BY THE NATIONAL SLEEP FOUNDATION (NSF)


To further genetic research in narcolepsy, The National Sleep Foundation (NSF) will establish the first National Narcolepsy Registry (NNR).  This confidential registry of patient information will enable researchers to:

The registry's ultimate goal is to develop a better understanding of narcolepsy and to improve treatment by identifying the gene or genes associated with it.  NSF Board Member Michael J. Thorpy, M.D., of the Sleep Disorders Center at Montefiore Medical Center in New York, will be the director of the registry.  The NSF is working in collaboration with the Narcolepsy Network, a patient support group.

The NSF has created an Advisory Board to assist with establishing the policies and procedures of the registry.  The NNR Advisory Board is comprised of those with expertise in science, research, ethics, advocacy, and treatment and patient support.  It's members include:

Among the many measures to be accomplished, establishing patient confidentiality is an NSF priority for the registry.  To maintain confidentiality, all information will be stored in a database on only one computer, and all information will be coded by number.

The NNR is a component of the NSF's Towards the Cause of Narcolepsy Program.  The program was established to raise public awareness of narcolepsy through patient information and public education materials, and to stimulate narcolepsy research.  The NSF organized an International Narcolepsy Workshop that was held on September 28-29, 1996, in Washington D.C., to strengthen research interest in this area.

For more information about the genetic registry, please contact:

NSF Narcolepsy Coordinator
Stephanie Capalbo
Tel: 202-785-2300
Fax: 202-785-2880
E-mail: natsleep@erols.com

STANFORD UNIVERSITY CENTER FOR NARCOLEPSY
Dr. Emmanuel Mignot, Director
701 Welch Road
Suite 2226
Palo Alto, CA 94304
Tel: 650-725-6517
Fax: 650-725-4913
E-mail: mignot@leland.stanford.edu
Contact person: Marlene Ivy, Administrative Associate
Internet Address: http://www.med.stanford.edu/school/Psychiatry/narcolepsy/
Newsletter: None

What they offer:

Research information on narcolepsy.  The web page gives details of research efforts, selected publications, staff, epidemiology, socioeconomical impact, symptoms, diagnosis, medications, an animal model for narcolepsy, and basic mechanisms involved in the disease.

Clinical research:

Volunteer Blood Donors for Stanford Center for

Narcolepsy Research:

Stanford University Sleep Research Center, Stanford, California

1-800-49-SLEEP



Genetic research in narcolepsy is moving at a rapid pace at Stanford University.  We need your help to pursue our search for the narcolepsy susceptibility genes.  Our research protocol involves sending you a blood kit which you can take to your local doctor, clinic, or hospital to have blood drawn (at our cost).  Our laboratory will analyze your blood sample and provide you with your HLA typing results so that you will know if you carry the HLA markers for narcolepsy.  In addition, we ask that you complete a detailed sleep questionnaire describing your narcolepsy symptoms.  We are also interested in gathering samples from some of your family members.

Volunteers will be included only if they have clear cut cataplexy(loss of muscle tone/paralysis during laughter or other strong emotions).  From these volunteers, we are recruiting individuals from all ethnic groups but are particularly interested in those who are not of caucasian origin.  Also we are interested in including family members who fit into one of the following categories:

  1. Both of your parents are alive and willing to contribute a blood sample (whether or not they have narcolepsy).
    or
  2. Other relatives affected with narcolepsy and cataplexy who are also willing to participate.

For more information, please contact the clinical coordinator, Michele Okun at 650-725-6512 or 1-800-49-SLEEP.

Thank you, in advance, for your participation in and your support of our common goal.

CENTER FOR NARCOLEPSY RESEARCH (M/C 802)
College of Nursing
The University of Illinois at Chicago
Dr. Sharon Merritt, Director
845 So. Damen Ave. - Room 539
Chicago, IL 60612-7350
Tel: 312-996-5176
Fax: 312-996-7008
E-mail: narcolep@listserv.uic.edu
Contact person: General Staff
Internet Address: http://www.uic.edu/depts/cnr
Newsletter:

What they offer:

The Center staff are interested in helping all people with narcolepsy, particularly people who are newly diagnosed, so they can find better ways to cope with this disorder during the early stages of their treatment.

Questions about scientific knowledge from teachers, physicians and nurses are welcome.

Educational programs for health care professionals as well as for narcoleptics and family members. "Life of a Sleepy Person" is one of the educational conferences they provide.

LIFE OF A SLEEPY PERSON IV: New Perspectives on Disorders of Excessive Sleepiness

A conference for healthcare professionals, including physicians, nurses, counselors, therapists, and researchers and interested laypersons interested in narcolepsy. The conference will be held in Chicago on March 4-5, 1999 at the Chicago Marriott O'Hare.

Program Format:

The conference will start with an informal Narcoleptics and Partners (NAP) support group meeting and an evening reception on Thursday, March 4. Events on March 5 will include invited addresses, discussions with poster presenters, research paper presentations, and a panel.

The Program included invited speakers:

Registration before 1/21/99 for a Researcher/healthcare professional is $85, after 1/21, $95. Registration before 1/21/99 for Interested lay person/student is $40, after 1/21, $50.

For more information, call (312) 996-5176.

Make checks payable to: University of Illinois at Chicago

Mail registration information and check to:

Center for Narcolepsy Research (MC 802)
College of Nursing
University of Illinois at Chicago
845 South Damen Avenue, Room 215
Chicago, IL 60612-7350

NARCOLEPSY and CATAPLEXY FOUNDATION OF AMERICA (NCFA)
445 E. 68th Street
L12
New York, NY 10021
Tel: (212) 570-5506

FLORIDA NARCOLEPSY ASSOCIATION

The Florida Narcolepsy Association is a collective of people that "helps" or "comforts" others. This is the idea behind the Florida Narcolepsy Association -- to be there -- to lend a hand toward those afflicted, as well as their families, doctors and friends.

E-mail: sleepymc@aol.com

Suggested Reading:

Marguerite Jones Utley who suffers from narcolepsy, has written a book titled "NARCOLEPSY: A Funny Disorder That's No Laughing Matter".  She generously donated 50 paperback copies for the The Great American SleepWalk teams to give to their legislators.  Thanks to Marguerite, many more people will be educated about narcolepsy!  If you would like more information on her book, you may e-mail her at mjutle@aol.com For more books on sleep disorders, visit The Book Well.

Narcolepsy Primer,  by Meeta Goswami, MPH., Ph.D., and Michael J. Thorpy, M.D., Bronx, New York: Montefiore Medical Center, 1991.

ARTICLES AND OTHER RESOURCES FOR NARCOLEPSY

MODAFINIL/PROVIGIL INFORMATION

The Provigil Web Site

Cephalon - Manufacturers of Provigil

Provigil approved for Narcolepsy (12/28/98)

Narcolepsy Drug Offers Wide Appeal (12/29/98)

A gentle lift for Narcoleptics - US News & World Report Online (1/11/99)

New Narcolepsy treatment brings hope of reaching those who are undiagnosed - National Sleep Foundation

Please note: Meetings and events information are often taken from the brochures that we receive from the sponsors. There may consequently be some mistakes. If you see a mistake, please E-mail: Nodmaster. We also welcome your comments, suggestions, questions or notification of a sleep related event or more information on narcolepsy.

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