Link's to info. and other sites
Taken from Narcolepsy Internet jumpsite page, but edited to include only those sites still available. And added a few of my own. You have a great site not listed here? Let me know, I'll add it if it seems to fit! narcolepsy_indiana@insightbb.com

Support Groups
Narcolepsy Internet http://www.narcolepsy.org
On-line support and information for people with narcolepsy and idiopathic hypersomnia, their families, their partners and care givers. Sign up for the list. I prefer the digest as you only get one email a day with all the posts for the day. Everyone is very educational and helpful. I would not be where I am with my understanding without being part of this list for the last 5 years! Someone always has a factual response backed up with documentation from credible sources.
Narcolepsy Network http://www.websciences.org/narnet
Narcolepsy self-help Group. They have an annual conference and quarterly newsletters. Coordinate US-Based self-help groups. Pamphlets and information for narcoleptics and their family. Their web pages are very static.
Sleep/Wake Disorders of Canada http://www.geocities.com/hotsprings/1837/
Canadian Self-Help organization for all sleep disorders including narcolepsy. Their site has many Personal Stories
Florida Narcolepsy Association http://www.geocities.com/hotsprings/8627/
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 with Narcolepsy, as well as their families, doctors and friends.
Narcoleptics and Partners (N.A.P.) http://www.uic.edu/depts/cnr/info.htm
Narcoleptics and Partners (N.A.P.), a support group for people with narcolepsy, and their friends or family members. N.A.P. is located at UIC.
Narcolepsy & Sleep Disorders Newsletter http://www.narcolepsy.com
An international newsletter for patients, physicians, and researchers. Ambitious but incomplete pages, alternative views on treatments, support groups, and Sample Newsletters on-line.
Parents of Teenagers with Narcolepsy http://med-www.stanford.edu/school/psychiatry/narcolepsy Email or call the research coordinator Mali Einen and she can put you on the list!

Research
Stanford University Center For Narcolepsy http://med-www.stanford.edu/school/psychiatry/narcolepsy
UIC: Center for Narcolepsy Research http://www.uic.edu/depts/cnr/cindex.htm
An understanding of the pathophysiology of Narcolepsy is considered by some to be a key factor in advancing knowledge about the role of the brain in controlling sleep and sleepiness. Nice Web site including: FAQ; Research information; Narcoleptics and Partners; Jump station.
A hundred years of research: Stanford http://med-www.stanford.edu/school/psychiatry/narcolepsy you have to go to publications and then select a hundred years of research. Very good over all understanding of Narcolepsy and what we've learned.
Sleep Research Online Paper Administration of hypocretin into the brains of narcoleptic dogs.  ../Admin of Hcrt-1 in Dogs with N.pdf Very technical reading, but informative! C-Fos active wakefulness. ../c-fos.pdf

Brain Donations: It's important that they have brains from people who had Narcolepsy. It will help future generations with treatments and possible cures! Please, make the decision to donate. You won't need it anymore!
UCLA Please contact Dr. Tourtellotte's Brain Bank Coordinator at 310-268-3536. You can help prevent the suffering of future generations!
STANFORD Can't remember who you contact for them. But I'm sure Mali Einen will know. She's the research coordinator Phone: 650-725-6512

News
Scientific American Narcolepsy January 2000 http://www.npi.ucla.edu/sleepresearch/sciam.htm This is an old article, before they documented on Hypocretin discovery, but it's wonderful on understanding what makes Cataplexy work in a VERY technical explanation. The comment about "falling asleep in one's soup" is NOT from Dr. Seigel he was appalled that they would make a statement like that, when he KNOWS that someone with Narcolepsy can fall asleep ANYWHERE and Cataplexy can happen and hurt you severely. I know people who have broken bones and severe cuts and concussions, usually the survival instincts kick in and the adrenaline will flow and allow you to come out of EDS or C to react to deadly threats, I know it does for me, even if it means a more severe and prolonged attack will follow.

Other
National Organization for Rare Disorders http://www.rarediseases.org/
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. with rare disorders and disabilities. They have a help system to receive medicines you cannot afford!
Orphan Medical http://www.orphan.com
Orphan Medical has finally gotten Xyrem (GHB) approved for people with Narcolepsy! Orphan describes itself as a company "Dedicated to Patients with Uncommon Diseases".

Sleep Disorders
SleepNet http://www.sleepnet.com
Everything you wanted to know about sleep disorders but were too tired to ask. Sites are Rated! One of the first places to stop when surfin' for Sleep Disorder information. Of particular note is their: Guide to Accredited Sleep Disorders Centers page.
The Sleep Well http://www.stanford.edu/~dement/ http://www.stanford.edu/~dement/
Sleep Disorder information at Stanford. One of the most comprehensive jump stations for WWW browsing about Sleep Disorders. His old site has been taken down, he's retired now. But it used to have a neurology symptoms test that was extensive and gave you the list in order of matching to your symptoms. I would never have thought of Narcolepsy on my own. But taking that test it was the first one on the list. When I actually read a well explained symptom list of Narcolepsy, I ended up almost hitting the keyboard with my face, because my Cataplexy attack was that strong! I was so happy I had words for Cataplexy and Excessive Daytime Sleepiness, and Sleep Paralysis! My Hallucinations did not mean a trip to the funny farm, it was normal! I knew I wasn't crazy anymore! Thank you Dr. Dement for your huge contribution to the understanding and research for Narcolepsy, I'll never forget you! Kristy Heeter
National Sleep Foundation http://www.sleepfoundation.org
The National Sleep Foundation is a nonprofit organization dedicated to both the prevention of catastrophic accidents caused by sleep deprivation and excessive sleepiness and to enhanced quality of life for the millions of Americans who suffer from sleep disorders.
European Sleep Research Society http://www.esrs.org/
The ESRS is an international scientific non-profit organization and promotes all aspects of sleep research.
Sleep Research Online http://www.sro.org
A monthly on-line magazine produced by World Federation of Sleep Research Societies
News Articles and Sleep Research Online http://www.websciences.org/bibliosleep/naps/
Sleep Medicine Online http://www.users.cloud9.net/~thorpy/
Dr. Thorpy's Sleep Medicine website with an extensive set of links listing resources regarding all aspects of sleep including, the physiology of sleep, clinical sleep medicine, sleep research, federal and state information, patient information, and business-related groups.
Circadian technologies, Inc. http://www.circadian.com/
Information on Shiftwork, Circadian Rhythms, et cetera.
Sleep Apnea FAQ http://www.newtechpub.com/phantom/faq/osa_faq.htm
Frequently Asked Questions about Apnea (Apnoea if you use British spellings)
Australia Narcolepsy http://www.nodss.org.au/Hypocretin - John Sweca.htm

Medical
Information
Center for Biological Timing http://www.cbt.virginia.edu/
The NSF Center for Biological timing (aka Circadian Rhythms).
Bio Med Net http://biomednet.com
The BioMedNet Club for biological and medical scientists is an online information, communication and shopping service, owned and operated by BioMedNet Limited, and available through the internet via the World Wide Web. (NOTE: They require a free membership to access their pages.)
Cognitive Enhancement Research Institute http://www.ceri.com
Smart Drug News
" Smart Drug News is the leading newsletter on smart nutrients and cognitive drugs. Published ten times per year by CERI, it covers the most current information on how to obtain and how to use nutrients, herbs, and pharmaceuticals to enhance a myriad of mental functions that we depend on to be happy, successful, productive, and fulfilled people."
RxList: Internet Drug Index http://www.rxlist.com
Lookup drug information by brand or generic name.
The Medicine Program http://www.themedicineprogram.com/
Unable to afford your medication? Look here for programs which provide medication at no cost for those who qualify.
The sleep cycle find/ask you doctor for a copy of your sleep summary and see how you stack up to what's normal on this page! http://www.ropersaintfrancis.com/services/sleepwake/sleepcycle.asp

Research
Center for Biological Timing http://www.cbt.virginia.edu/
NSF research foundation focused on the biological clock and biotiming research.
Hypocretin Gene Report ../../../My Documents/HCRT gene report.doc

Alternative Treatments

Lighting  Many find that increasing different lighting around your work area helps keep the EDS at bay. http://www.brightenyourlife.info/

Information
ADA
US DoJ's ADA Home Page http://www.usdoj.gov/crt/ada/adahom1.htm
Information from the source.
Americans with Disabilities Act Documentation Center http://www.jan.wvu.edu/links/adalinks.htm
Great Lakes DBTAC
The Small Business ADA Information Answer Center http://www.ada-infonet.org
Regional ADA Technical Assistance Center. The Rocky Mountain ADA Technical Assistance Center is authorized by NIDDR to provide information, materials, and technical assistance to individuals and entities that are covered by the Americans With Disabilities Act (ADA).

Internet
Internet Hoaxes http://hoaxbusters.ciac.org/
US DOE Computer Advisory Council's lists of Internet Hoaxes
Computer Virus Myth and Hoaxes http://kumite.com/myths
Panorama Pharmacy: Compounding Pharmacy on-line (http://emanate.com/panorama)

Other Related Disabilities
Attention Deficit Disorder Clinic http://www.addclinic.com/
National Center for PTSD http://www.dartmouth.edu/dms/ptsd
Research and Education on Post Traumatic Stress Disorder
Brain Disorders Network http://www.brainnet.org
This WEB site is devoted to helping people and their caregivers better understand the clinical advances both being studied in the laboratory and those that are available now to ameliorate these conditions. They hope to provide their visitors with 'cutting edge" developments by inviting leading clinicians, researchers and therapeutic manufacturers to share their knowledge and, most importantly, interact.
The Cold Body Page http://www.mall-net.com/mcs/coldbody.html
it has been said that most people with Narcolepsy also have low body temperature and blood pressure. Enough to think at one time it was a diagnostic symptom! But, it is quite common.
Invisible Disabilities Great book to get for those family and friends that just "don't get it". http://www.myida.org/

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