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
Twitter
New MAB Memeber
Presentation at ASBA
Tweet from SRS
Webinar on CRSDs
CSD-N Supports Orphan Drug Law
Non-24 Drug Approved
Write NIH To Add DSPD, N24
Healthy People 2020
Changes on the Board
Amazon to Donate to CSD-N
Websites Link to CSD-N
Archived News
More About Us
Email List
Brochure
Q&A Docs
Fact Sheet
Merchandise
Start School Later
Disclaimer
Facebook, LinkedIn, Twitter
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

CSD-N is now on Twitter

Circadian Sleep Disorders Network has begun posting on Twitter! @CSD_N. You can visit us at twitter.com/CSD_N (yeah, they don't allow hyphens in the name, so we used an underscore). Please follow us. Thanks to sleep activist Kasha Oelke for volunteering to maintain this account and to keep tweeting on our behalf.

New Member on Medical Advisory Board

Circadian Sleep Disorders Network is pleased to welcome Dr Charmane I Eastman, at Rush University Medical College, to our Medical Advisory Board. Dr Eastman has done research on the Phase Response Curve, and has provided us with valuable advice on that subject, and we are happy she has agreed to join us.

Presentation on Circadian Rhythm Sleep Disorders at ASBA Conference

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/ASBAconf.pdf, and the slides at www.circadiansleepdisorders.org/docs/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

Tweet from the Sleep Research Society

"If sleep does not serve an absolutely vital function, then it is the biggest mistake the evolutionary process has ever made"

Webinar on Circadian Rhythm Sleep Disorders

ASBA logo We've posted the full presentation on YouTube at youtu.be/21UdTspJyvg. You can also download it from www.circadiansleepdisorders.org/docs/ASBAwebinar.wmv (it's a big file, about 200MB, in .wmv format), and play it on your computer. The text and slides are also posted separately, at www.circadiansleepdisorders.org/docs/ASBAwebinar.pdf (text as a PDF file) and www.circadiansleepdisorders.org/docs/ASBAwebinarSlides.pdf (slides, PDF, 3 MB). And feel free to pass these on to others - we're in the business of raising awareness, after all.

The webinar, by Peter Mansbach (CSD-N president) on Circadian Rhythm Sleep Disorders was broadcast by ASBA (American Sleep and Breathing Academy) on Wednesday, March 19, from 11:30 am - 12:30 pm MDT (Mountain Daylight Time). The talk was targeted for an expected audience of sleep technologists, nurse practitioners, and other medical personnel in hopes of raising awareness of Circadian Rhythm Sleep Disorders, their diagnosis and treatment.

CSD-N Supports NORD on Orphan Drug Law

NORD logo Peter Mansbach at the U.S. Capitol Circadian Sleep Disorders Network has added its name to the list of organizations supporting the NORD (National Organization of Rare Diseases) position, which opposes the proposed repeal of the orphan drug tax credit. Individuals who wish to support NORD's position may do so here.

Peter Mansbach (CSD-N president - photo at right) attended NORD's Congressional Briefing on this matter on Mar 20, to show support on this issue to the Senate staff members who attended (from the staff of Sen Barrasso and Sen Brown). There were several speakers, including members of the patient community who told their stories.

Non-24 Drug Hetlioz (Tasimelteon) Approved

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.

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.

Healthy People 2020

We Support a Healthier Future - Healthy People 2020
Circadian Sleep Disorders Network has joined the Healthy People 2020 Consortium, sponsored by the U.S. Department of Health and Human Services. One of their goals is improvement of Sleep Health.

Changes on the Board of Directors

Newly elected Board members Asli Kumcu and Andrew Wall joined the CSD-N Board of Directors on Jan 15, 2014. The Board has re-elected Peter Mansbach as president and Beth Macdonald as secretary. Andrew Wall has been elected treasurer. James Fadden remains as interim vice president, until the Board selects a new VP.

Two members are also leaving the Board: James Fadden and Susan Plawsky. We want to thank them for their service. James was a Founding Member, and without his help and encouragement we would not be where we are today. He also wrote the scholarly article on Non-24 that we submitted to NORD and they posted. Susan has been a very responsive Board member, and has helped immeasurably with editing and other advice whenever requested. Both of them will be missed.

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.

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 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/.

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.

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 Jul 19, 2014
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