 |
 |
|
|
Circadian Sleep Disorders Network is a nonprofit organization dedicated to improving the lives of people with chronic circadian rhythm disorders.
We aim to increase awareness within the medical community and among the general public, to provide emotional support and practical ideas for people living with these disorders, to encourage research into circadian rhythms, and to advocate for accommodations in education and employment for people with circadian rhythm sleep disorders.
Circadian Rhythm Sleep Disorders (CRSDs or CSDs) are neurological disorders in which the sleep-wake cycle is out of sync with the day-night cycle. These include in particular Delayed Sleep Phase Disorder and Non-24-Hour Sleep-Wake Disorder. Also included are Advanced Sleep Phase Disorder, Irregular Sleep Wake Disorder, Shift Work Disorder, and Jet Lag Disorder, which are defined here.
Delayed Sleep Phase Disorder (DSPD), also called Delayed Sleep Phase Syndrome (DSPS), is characterized by an inability to fall asleep until very late at night, with the resulting need to sleep late in the morning or into the afternoon.
Non-24-Hour Sleep-Wake Disorder (Non-24), also called Free-Running Disorder (FRD), is a condition in which a person's day length is significantly longer than 24 hours, so that sleep times get later each day, cycling around the clock in a matter of days or weeks.
Please refer to our descriptions, definitions, and treatments pages for more details, and print out our brochure and/or Q&A documents to give to others.
We can progress toward our mission of promoting awareness and accommodation only if we can demonstrate that we represent a community of people who suffer from these disorders. Please join now, so we can better help you and the CSD community in achieving our common goals. More details are on the Join page.
Last year's members: if you haven't renewed yet, please do so now. Renew now!
We are a 501(c)(3) organization based in the U.S., serving the global circadian sleep disorders community. We are a patient organization, entirely supported by member dues and contributions. We are all unpaid volunteers.
We are asking our members and followers to give our brochure, and/or our Q&A booklets, to their sleep doctor and their general doctor on their next visits. It is vital to all of us suffering from circadian disorders that more doctors and their support staff understand these disorders and how disruptive they can be. The more doctors who know about us, the more patients we can reach, inform, and support. And the larger our membership, the more credible our voice on behalf of all people with circadian sleep disorders.
You can print out the brochure on US letter paper
(8½x11) or on A4 paper (non--US).
Booklets can be printed for DSPS or for
Non-24 (the same file can be printed on either US or A4 paper).
Alternatively you can email us at
to request a printed copy of any or all these documents (please specify which).
Be sure to include your name and full postal address. We will send these at no charge to you.
Recently the National Sleep Foundation (NSF) created a new web page on non-24 with some serious and harmful misinformation. Thanks to our members' emails to them, NSF has changed the most objectionable statement to our satisfaction and added a link to our website. However, they have not yet made the other modifications we asked for. And they still do not list DSPD at all. So we're urging you again to write them.
Tell the NSF to add DSPD to their website, and remind them of our remaining concerns about the non-24 pages. Details, including instructions and a sample email, are here. (Our previous request, with more details, is here.)
A third article in a series on DSPS was just published on salary.com, featuring an interview with CSD-N member Tom Lemmon on how he has managed his career as a software engineer. This article is titled Should Some Employees Be Allowed to Start Work Late?. The second in the series was Change Your Career, Not Your Sleep Habits, about member Maya Kochav, a freelance writer. In the first article, How Your Bedtime Is Affecting Your Job Performance, our president, Peter Mansbach, was interviewed. Thanks to board member Susan Plawsky for suggesting this topic to the reporter and arranging the interviews.
At our urging, NORD, the National Organization of Rare Diseases (www.rarediseases.org) has added Non-24-Hour Sleep-Wake Disorder to their list of rare diseases. Special thanks to James Fadden, our vice president, who wrote up an excellent description of the disorder, supported by references to the research literature; and to Dr Katherine Sharkey, on our medical advisory board, who edited it and supported our application. The writeup can be viewed at www.rarediseases.org/rare-disease-information/rare-diseases/byID/1275/viewAbstract. You need to sign up at NORD [free] to see the full text.
 Some walkers in the National Sleep Walk |
 Walk organizer Julie Flygare and CSD-N president Peter Mansbach after the walk |
Assembled group before the walk
Circadian Sleep Disorders Network is an affiliate sponsor of the third annual U.S. National Sleep Walk, to "celebrate sleep health & sleep disorder awareness in our nation's capital". We got a nice paragraph on their affiliates page, our name on the back of their T-shirts, and a mention in their press release.
The walk was held March 3 at the Lincoln Memorial in Washington, DC. It was scheduled an hour later than previous years, in part due to our lobbying. We even won a Sleep Spirit Award for our CSD-N sign! (see photo above right)
This is scheduled in conjunction with the (U.S.) National Sleep Foundation's National Sleep Awareness Week®, March 3-10.
Circadian Sleep Disorders Network was recently accepted as the newest member of NSART,
the National Sleep Awareness RoundTable. This is part of NSF,
the (U.S.) National Sleep Foundation, operating under a grant from CDC, the (U.S. government) Centers for Disease Control.
Our president, Peter Mansbach, presented some information about CSD-N at the meeting on Feb 28. The text of the talk, together with a brief introduction to NSART, can be viewed
here.
Our president, Peter Mansbach, presented some thoughts at the NIH (U.S. National Institutes of Health) Sleep Disorders Research Advisory Board meeting on Feb 25. These included a renewed push to get circadian sleep disorders listed on the NIH web site, and two major concerns about research into these disorders. The text of the talk, together with a brief summary of other topics discussed, appears
here.
We've put together a short Fact Sheet as a quick way of introducing circadian sleep disorders to people who don't know about them. It's one side of one sheet of paper, so it's easy to print out. It's shorter and less dense than our brochure or our Q&A booklets, so it's a quick and easy read, just the basics.
We posted a video re-enactment of last year's presentation to the National Institutes of Health by Peter Mansbach, our president, at
youtu.be/reOpxPFRuvE.
We hope soon to do some shorter, punchier videos more suited to spreading awareness of our disorders. This one was to introduce CSD-N and our mission to NIH, and also allowed us to develop skills in this new (to us) medium.
Peter also attended the Narcolepsy Network conference in October. The purpose was twofold: to learn from them how they spread awareness of their disorder so successfully, and to raise awareness of circadian disorders. Further details are posted here. Our brochures and Q&A documents were exhibited near the registration desk at the conference (photo at left).
Circadian Sleep Disorders Network has formally affiliated with the Niteowl Email List. What does this mean? CSD-N grew out of this list - the founders of CSD-N "met" on this list, many of our members participate, and we share the same goals. We are also available to assist the list administrator if needed. Nothing about the list's operation will change.
Our brochure is geared to the general public, to introduce DSPS and Non-24 to people experiencing symptoms of these disorders, and to their families.
Please distribute it to anyone who may be interested.
Print on lightly colored paper for some color, if you like. We used ivory.
| Brochure - web display |
Print on US letter size paper, PDF Print on A4 size paper, PDF |
The web display version shows the brochure panels in easy-to-read order. The print versions are meant to be printed out on both sides of a sheet of paper, then folded in thirds, creating a brochure. (In the print version, the panels will appear out of order on-screen.)
We have posted documents describing DSPS and Non-24, in an easy to read Question-and-Answer format. These are designed to give to family members, friends, employers, and school personnel, to help them understand these disorders. Feel free to print and distribute these. There are two different (but similar) versions:
| DSPS Q&A - web | printer | booklet* |
| Non-24 Q&A - web | printer | booklet* |
The web formats display nicely in your browser.
The printer versions are formatted by your browser for printing a multi-page document.
The booklet forms are pre-formatted PDF files that you can print on two sides of a single sheet of paper, which then folds in half into a booklet.
* When printing the booklet, be sure to flip on the short edge (select this option if you have a double-sided printer).
We also have a one page Fact Sheet that introduces DSPS and Non-24 to people who don't know about them. It's a quick and easy read, just the basics.
We are offering merchandise (mugs, T-shirts, tote bags, bumper stickers, and a messenger bag) with our name and logo through CafePress,
at
www.cafepress.com/circadiansleepdisordersnetwork. (Note:
if you just search CafePress you will find this merchandise, but at a higher price!)
Circadian Sleep Disorders Network is a Coalition Partner of Start School Later. We understand only too well the difficulties many teens have with early school start time, and we support the move to start school later.
We're still getting started!
This web site is intended to provide generic information about CSDs, and
is not intended to replace discussions with a healthcare provider.
You should not use the information on this website for diagnosing or treating a medical or health condition.
All decisions regarding patient care should be made with your healthcare provider.
Like us on Facebook |
Follow us on LinkedIn |
Visit us on Facebook |
Visit us on LinkedIn |