Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Mission
What Are CRSDs?
*** Join! ***
Help Spread Awareness
News Items
Invisible Disabilities Week
Board Nominations
Articles on DSPS
Hetlioz Update
New Board Member
Social Security Disability
CSD-N Goes Mobile
Presentation for Lighthouse
Presentation at ASBA
Write NIH To Add DSPD, N24
Websites Link to CSD-N
Archived News
More About Us
Email List
Brochure
Q&A Docs
Fact Sheet
Merchandise
Start School Later
Amazon to Donate to CSD-N
Disclaimer
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GuideStar
Our Email Address
The shortcut csd-n.org also gets you to this page, with less typing! But don't forget the hyphen!

Our Mission

Circadian Sleep Disorders Network is an independent 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 inform patients and health care providers about treatment options, to encourage research into circadian rhythms, and to advocate for accommodations in education and employment for people with circadian rhythm sleep disorders.

Note that Circadian Sleep Disorders Network is not affiliated with any pharmaceutical, medical device, or other company.

What Are 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.

Some people use the term reverse sleep, referring to the fact that sometimes people with DSPD and Non-24 end up sleeping during daylight and being awake at night.

Please refer to our descriptions, definitions, and treatments pages for more details, and print out our brochure, fact sheet, and/or Q&A documents to give to others.

Become a Member! or Renew Now!

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. Together we have a voice! 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.

Help Us Spread Awareness

image of brochure cover 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.

News Items

Invisible Disabilities Week

Invisible Disabilities Week logo Join the Invisible Disabilities Association in celebrating Invisible Disabilities Week, Oct 19-26, 2014. As we know, if you're missing a leg people are quick to offer help, but if you struggle with a sleep disorder, not so much. It's invisible, and often not even believed.

Nominations for the Board of Directors

Circadian Sleep Disorders Network is seeking people to serve on its Board of Directors for 2015-16. Requirements are posted at www.circadiansleepdisorders.org/docs/ReqDir.php. There are currently 4 open board positions.

To be considered for nomination by the Board, please send a brief statement of why you are interested, and any skills or experience in related areas (such as writing, public relations, fundraising, law, accounting, or healthcare) to the address on the Requirements web page. To introduce the candidates to the voting members, this text will be used in the newsletter sent out prior to the election, and on the election ballot.

You may also be nominated directly by 9 members in good standing via petition (see details at the bottom of the Requirements web page), but it can be easier to be nominated directly by the board.

The election will be held online during two weeks in December, with CSD-N members voting from the list of candidates. Directors start serving January 15, 2015.

Pursuant to the Bylaws, the board has already nominated the following people:

Additional board nominations will be announced as they are made.

Articles on DSPS Republished

Abilities Magazine, Fall 2014 One of our members wrote an article about her experiences with DSPS that was recently republished in the Fall, 2014 issue of Abilities, a magazine for people with disabilities published by the Canadian Abilities Foundation. You can view this issue online at http://www.bluetoad.com/publication/?i=228257. Click on the cover text "Sleep Troubles: We're Not Lazy, We're Niteowls" at bottom right. Our member's contribution, in pink, starts at the bottom of the second page of the article (page 26 of the magazine) and continues on the next two pages. They end with a link to the Niteowl email list which doesn't work online, but they have promised to fix that. They've added a link to CSD-N at the end of the online article.

The original article was published several years ago in Daily Kos at http://www.dailykos.com/story/2007/08/26/376330/-A-Little-Bit-Special-DSPS-a-sleep-disorder using the pseudonym DSPS owl. It is also republished on our website at http://www.circadiansleepdisorders.org/info/BDKarticle.php.

We also just noticed that our president, Peter Mansbach, had his experiences with DSPS republished on Paradise Sleep at http://paradisesleep.com/circadian-sleep-disorders/. That story starts several paragraphs down, after the link to Circadian Sleep Disorders Network.

Hetlioz Update

The FDA has updated its press release regarding its approval of Hetlioz (tasimelteon) by removing the "blind" qualification. It's now approved for non-24 in general. That should make it easier when dealing with insurance.

Previously posted: On January 31, 2014, the FDA approved Hetlioz (tasimelteon) for treatment of non-24 in the blind: www.hetlioz.com (Vanda Pharmaceuticals). It is now available in the U.S. by prescription. We assume it can be used off-label for sighted non-24 people, and possibly even for DSPS. It is supposed to work similarly to melatonin. Note: Circadian Sleep Disorders Network is not in any way affiliated with Vanda Pharmaceuticals.

New Board Member

Ed Grandi The Board of Directors is pleased to welcome Edward Grandi as its newest member. Ed was appointed by vote of the board to fill a recent vacancy as provided in the bylaws. Ed is a past Executive Director of the American Sleep Apnea Association, and his experience in running a sleep non-profit should prove valuable to us as we chart our future course.

Social Security Disability Claims Process

To assist members of the public to better understand the Social Security disability process, the Social Security Administration has created a helpful YouTube video series at https://www.youtube.com/playlist?list=PLGSYaZN04xzFCoEqDlY3n7xgWLh55vvDh

CSD-N Goes Mobile

smartphone We have upgraded our website to be more mobile-friendly. There are still some minor glitches being sorted out. Do let us know of any problems, and if you do, on which device you observed it, and please copy and send us the test line in green at the bottom of this page.

Presentation for Lighthouse Guild

Lighthouse Guild logo James Fadden, our vice president, spoke via telephone to a group of blind children and their parents. CSD-N had recently received a request from the Lighthouse Guild International (www.lighthouse.org/) an organization for blind persons and their families. They run a telephone support group for the parents of blind and visually impaired children. They asked if we had someone who could speak to their group about Non-24-Hour Sleep-Wake Disorder in blind children.

James volunteered. He has Non-24 (although he is sighted), and spoke to the group for over 2 hours on Wednesday evening. He spoke about the biology of N24, the symptoms, and treatments, with particular emphasis on melatonin and melatonin analogs. There was a lot of discussion and questions. Some of the children were totally blind and others were visually impaired. Many also had other conditions often related to circadian disorders such as autism. Several did have Non-24 and others had other sleep and circadian problems.

The psychologist who runs the group emailed afterwards to express how pleased they were with the presentation.

Presentation on Circadian Rhythm Sleep Disorders at ASBA Conference

Peter Mansbach speaking CSD-N president Peter Mansbach presented a talk on Circadian Rhythm Sleep Disorders at the ASBA (American Sleep and Breathing Academy) Sleep & Wellness conference in Scottsdale, AZ, on May 3. The talk was targeted for an audience of sleep technologists, nurse practitioners, and other medical personnel in hopes of raising awareness of Circadian Rhythm Sleep Disorders, their diagnosis and treatment.

ASBA logo The talk (audio with slides) is available on YouTube at www.youtube.com/watch?v=MgOcMh8g3Ps. The text is posted at www.circadiansleepdisorders.org/docs/talks/ASBAconf.pdf, and the slides at www.circadiansleepdisorders.org/docs/talks/ASBAconfSlides.pdf.

ASBA (as the name suggests) is primarily focused on sleep apnea. But they have a general mission to promote wellness, and are receptive to learning about other sleep disorders

Peter Mansbach speaking, with title slide on screen

Write NIH To Add CRSDs To Their Website

NIH has not included DSPD or Non-24 on their website!

The U.S. National Institutes of Health (NIH) has a number of web pages which talk about sleep disorders. In all these pages we see sleep apnea, narcolepsy, and restless legs; but we do not see any Circadian Rhythm Sleep Disorders - no Delayed Sleep Phase Disorder, no Non-24-Hour Sleep-Wake Disorder. It's no wonder people haven't heard of these disorders, and many doctors still don't recognize how serious they are....

Instructions and sample email are at www.circadiansleepdisorders.org/docs/campaigns/NIHWeb.php . Send email to twerym@nhlbi.nih.gov, and please copy CSD-N at csd-n-news@csd-n.org, so we can follow up, possibly including contacting higher ups.


I received this email from the NIH NHLBI Health Information Center in response to the above campaign. It represents good progress. Dr Twery took action in response to our emails by raising the issue with the Information Center. He passed the emails on to them, and they are aware of our issues. He did advise me that it's a slow process, and will take a long time. In my opinion, it would still help if more people wrote to him, since we are competing for very limited funds. Together we have a voice! Thank you.

Websites Link to CSD-N

We have asked other sleep- and health-related web sites to add a link to the CSD-N website, so interested people could learn more about circadian sleep disorders. That also helps our search ranking, making it easier for others to find us. Sites which have linked to us include: In addition, circadiandisorders.org, which was no longer being maintained, now forwards their traffic to us.

You can help: email other websites with a request to link to Circadian Sleep Disorders Network at www.circadiansleepdisorders.org. Please use this primary address when suggesting links, not the shortcut.

Archived News

Archived News 2014
Archived News 2013
Archived News 2011 - 2012 (incomplete)

More About Us

Affiliation with the Niteowl Email List

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.

Once you've signed up for the list, you can also browse previous posts at
lists.circadiandisorders.org/private.cgi/niteowl-circadiandisorders.org/.

Note that membership in Circadian Sleep Disorders Network and membership on the list are completely separate.

Our Brochure

image of brochure cover 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.)

Our Q&A Documents

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).

In Other Languages:

German     DSPS F&A - web     printer    

Our Fact Sheet

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.

CSD-N Merchandise

CSD-N mug 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!)

Start School Later

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.

Amazon Will Donate Part of Your Purchase to CSD-N

Circadian Sleep Disorders Network
The first time you go to smile.amazon.com you will be asked to select a charity. Please enter Circadian Sleep Disorders Network. Amazon will remember your selection. But you do have to go to smile.amazon.com instead of simply amazon.com, for each purchase, if you want 0.5% of that purchase to go to CSD-N. Note that you pay the same amount either way - through Smile the 0.5% goes to us, otherwise it goes to Amazon.

We have already received our first contribution check from Amazon! Please select Circadian Sleep Disorders Network as your charity. smile.amazon.com

Amazon and the Amazon logo and AmazonSmile and the AmazonSmile logo are trademarks of Amazon.com, Inc. or its affiliates.

More to come!

We're still getting started!

Disclaimer

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.


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© 2014 Circadian Sleep Disorders Network
Last modified Oct 19, 2014
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