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.

Circadian Rhythm Sleep Disorders (CRSDs or CRDs) 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, and Shift Work 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. Questions? See our DSPS Q&A.

Advanced Sleep Phase Disorder (ASPD), also called Advanced Sleep Phase Syndrome (ASPS), is the opposite. It is characterized by falling asleep very early in the evening, and waking up in the wee hours of early morning, unable to sleep further.

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. Questions? See our Non-24 Q&A.

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.

Take Our Survey! Circadian Sleep Disorders Network has launched its PATIENT POWERED REGISTRY AND SURVEY for people with Circadian Rhythm Sleep Disorders. The registry is open to anyone with a circadian rhythm sleep disorder from any country. You can sign up for the registry and take the survey (it's free) at CircadianSleepDisorders.org/registry. By collecting information from a large number of people actually suffering from these disorders, we can stimulate research into causes, treatments, and effects of circadian disorders. We often complain that so little research has been done on people suffering with Circadian Rhythm Sleep Disorders. One reason is the difficulty researchers have in locating people with these disorders. Well, this is your chance! You can make a difference! The information you provide can jump-start research on some of the questions we've been asking about for years - but only if enough people participate. You can also optionally allow researchers to contact you to participate in studies. Sign up now (free), and please take the survey . Note that the signup questions that you get first are not the survey! Part of the signup process with Invitae (the registry host, formerly AltaVoice) involves answering two pages of demographic questions like age, gender, race, etc. This is not our survey. After you've finished signing up you will be taken to our survey, called "Circadian Rhythm Sleep Disorders", which asks about your circadian disorders, sleep habits, treatment, and other disorders. Our survey has multiple pages. The actual number is dependent on how you answer some key questions. Please be sure to complete the entire survey. Otherwise, your responses will not be used in analysis. For more information, and to review the survey instructions and definitions, click here. Researchers: You can view the survey questions without taking the survey here. You can request participants to contact you for further research by contacting Invitae PIN (Patient Insights Network) (website) or emailing Circadian Sleep Disorders Network at registry for further information.

We are asking our members and followers to give our brochure, and/or our Q&A booklets, to their sleep doctors and their general doctors 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 U.S. letter paper (8½x11) or on A4 paper (non--U.S.). Booklets can be printed for DSPS or for Non-24 (the same file can be printed on either U.S. or A4 paper). Alternatively you can email us at csd-n to request a printed copy of any or all these documents (please specify which, and how many you really need). Be sure to include your name and full postal address. We will send these at no charge to you.

CSD-N Seeks Candidates for Board

Sept 2020

Circadian Sleep Disorders Network will be holding elections for its Board of Directors, and is seeking some new faces. Requirements are described in https://www.circadiansleepdisorders.org/docs/ReqDir.php. Meetings are held by online forum, so you can log in at any time of day to read what's been posted and post your replies. Meetings do continue for two months or more, though often not very actively.

If you're interested, please let us know soon (latest Nov 10), following the instructions at the end of the above document. Directors start serving January 15, 2021. Terms generally run for two years.

We are also often looking for other volunteers willing to help. These can be board members but do not have to be. If you're interested in volunteering, please let us know.

Pandemic Reveals Teens' Natural Sleep Times

Aug 2020

"Not surprisingly, during the pandemic, without the need to get up and go to school at a set time, most teenagers went to sleep about a half-hour later than before COVID.... Sixth graders went to sleep at a median time of 10 p.m., seventh and eighth graders at 11 p.m., ninth and tenth graders at midnight, and eleventh and twelfth graders at 12:30 a.m...

"More surprisingly is that without the need to wake up at a specific time, almost all of the teenagers in the survey woke up at 9 a.m. – giving middle schoolers nine hours of sleep and high schoolers eight hours."

Quoted from Teens Might Finally Get Enough Sleep with 9 a.m. LAUSD Start Time in (L.A.) Spectrum News, Aug 20, 2020.

Company Seeks Patient Data

Aug 2020

We have been asked to post this information:

Rare Diagnostics is an online rare disease-specific symptom checker for undiagnosed patients, which they can access 100% free of charge. This provides patients with personalized information about relevant diseases and connects them to online communities of patients with the same symptoms.

Rare Diagnostics believes that connecting undiagnosed patients with patient communities is extremely valuable throughout their diagnostic process. They also realize that patients may have difficulty finding the relevant patient organizations, and Rare Diagnostics could be a solution for this.

They are looking to increase the diagnostic accuracy of their software, and to accomplish this they have built an online form for diagnosed rare disease patients to share their experiences.

They have assured us that the data they collect will be anonymized. However, Circadian Sleep Disorders Network cannot independently verify the security of your information.

You can learn more about their effort, and participate in their survey, at

www.rarediagnostics.com.

CSD-N Presents at SRBR2020

June 2020

Alexandra Wharton, CSD-N Board Member and Social Media Liaison, presented a poster about circadian rhythm disorders at the Society for Research on Biological Rhythms (SRBR) Biennial Meeting in June. SRBR is dedicated to advancing rigorous, peer-reviewed science and policies related to sleep and circadian biology.

Attended by 700 chronobiologists and industry experts from 40 countries, the virtual conference covered the latest research about the mechanisms and functions underlying the entrainment and expression of biological rhythms. Session topics included sleep-wake cycles, hormonal and metabolic rhythms, molecular basis of circadian timing and the identification of genes underlying rhythmicity.

During CSD-N's poster session and Q&A, Alexandra outlined what Delayed Sleep Phase Disorder and Non-24 are, highlighted CSD-N's patient-powered survey and explained that DSPD has high co-morbidity with ADHD and other mental health conditions.

She discussed the challenges Circadian Rhythm Disorder (CRD) sufferers experience including lack of proper diagnosis, treatment and accommodations at school and work. She stressed that genetic and biomarker discoveries are critical for CRD patient advocacy as they highlight the physiological differences in people with these disorders, compared with typical sleepers.

NIH SDRAB Meets

June 2020

Many thanks to Susan Plawsky for representing the circadian disordered community on the (U.S.) NIH Sleep Disorders Research Advisory Board (SDRAB) for the past four years. Thursday, June 11, was her last meeting as patient representative on that board. Two other members of our community have applied for the vacant slot.

The SDRAB is charged with preparing the Sleep Disorders Research Plan. They have been working on creating this plan for the past four years, and it is currently waiting on review by the various institutes within NIH and other government departments before being released.

The meeting was of course virtual, in these pandemic times. Among the attendees, in addition to Susan, were CSD-N president Peter Mansbach, board member Alexandra Wharton, and member Alexandra Escalera. There were talks on hypersomnia/narcolepsy by Dr Thomas E Scammell and on lighting (in regard to sleep and circadian rhythms) by Dr Mariana G Figueiro. Peter asked Dr Scammell about overlap between DSPD and narcolepsy, but Dr Scammell has not seen this in his practice. Alexandra Escalera also spoke about her struggles as a DSPD patient.

CSD-N Is On Instagram

May 2020

CSD-N has opened an account on Instagram. Thanks to our social media director, Alexandra Wharton, for posting there and on our other sites: Facebook, LinkedIn, and Twitter.

White Paper Progresses

Apr 2020

As (previously described), SRS/AASM (Sleep Research Society/American Academy of Sleep Medicine) and SRBR (Society for Research on Biological Rhythms) are preparing a White Paper on needed research in circadian rhythms, and invited CSD-N to provide input from the patient perspective. We did so last June, in our Needed Research document.

In March we received a draft of the White Paper, and again James Fadden, Peter Mansbach, and Susan Plawsky sent our comments and suggested revisions to them. The White Paper has been further edited, was approved by the SRS board, and has been submitted to the journal SLEEP.

This is a free mailing list support group for people with DSPS and Non-24 to share their experiences. It's a good place for people just discovering these disorders to hear how others deal with them, as well as for long-time participants to get support and to provide support to others. There are often discussions of evolving treatment, useful to all. For further information, and to sign up, go to www.circadiandisorders.org/list.

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

Affiliation

Circadian Sleep Disorders Network is affiliated with this email list, and our volunteers assist the list administrator with some chores. CSD-N was formed by participants on this list, and many of our members post regularly. But we have no control over what appears or who can join, and list membership is completely separate from membership in CSD-N.

Posting

Once you've signed up for the list, you post by sending an email to niteowl circadian disorders . Everyone on the mailing list receives that post as an email, and you receive everyone else's posts as emails. If you don't like to get separate emails, you can opt to receive in digest form, typically one email a day containing all the day's posts. You make that selection after signing up by logging in (using the password you created when signing up for the email list) at www.circadiandisorders.org/list.

Rules

There are some rules:

The rules that the list software enforces are

no messages over 40 KB

no images (including emoticons and that cute little flower in your sig line)

no attachments, and, of course

no messages from non-list-members

One frequent problem is that people with more than one e-mail account try to send from an address that isn't registered as a member here. An infrequent problem is that a few e-mail providers aren't accepted at all so another e-mail account must be (acquired and) used. gmail generally works well.

An additional rule is PLEASE do not just reply to a message with a subject line containing "Niteowl Digest, Vol xxx, Issue xxx". That is obviously not informative and if you aren't careful you may include the whole list of messages in the Digest, making your message too large for the list.

Digest or not, it is a good idea to trim whatever you are replying to leaving just enough for people to know what you are replying to.

Of course, don't be snippy or insulting, and please take off-topic conversations off-list. And no advertising.

Archives

Once you've signed up for the list, you can also browse previous posts in the archive at

lists.circadiandisorders.org/private.cgi/niteowl-circadiandisorders.org/.

There is also a mirror of the archive on Yahoo at https://groups.yahoo.com/neo/groups/nite-owl/info. This is useful when the primary archives are not working, as sometimes happens. Login to your Yahoo account, or create one (free) - link is at the top right on that page. Then you have to join the Yahoo copy of the list - this is separate from signing up for the list itself - there is a button on the Yahoo page to do this.

Unsubscribing

To unsubscribe from the Niteowl email list go to

http://lists.circadiandisorders.org/listinfo.cgi/niteowl-circadiandisorders.org

and follow the directions at the bottom of the page. You will need to know your list password.

If you do not know your list password, send email to

niteowl-request@lists.circadiandisorders.org

with PASSWORD in the subject line. This email must come from the same email address that you subscribed from (which is the one your incoming Niteowl list emails go to). Your password will be sent to you at that address.

If that doesn't work, you can unsubscribe by sending email to

niteowl-request@lists.circadiandisorders.org

with UNSUBSCRIBE in the subject line. This email must come from the same email address that you subscribed from (which is the one you your incoming Niteowl list emails go to). If you do this, you will get an email back asking you to confirm. You must follow the instructions and confirm, or you will not be unsubscribed.

Help

For more (or more current) help on list commands, send email to

niteowl-request@lists.circadiandisorders.org

with HELP in the subject line.

Our brochure is geared to the general public, to introduce DSPD (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.



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 DSPD (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, one for DSPD and the other for Non-24:

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:

We also have a one page Basic Fact Sheet that introduces DSPD and Non-24 to people who don't know about them. It's a quick and easy read, just the basics.

Former board member and artist Lily Style has created an infographic describing Circadian Rhythm Sleep Disorders. View it in your browser at www.circadiansleepdisorders.org/docs/CRSDGraphic.php. Feel free to repost the graphic to help raise awareness.

You can print it directly from your browser (we suggest making the browser window full screen - the image will resize). We are also posting JPG images in various proportions for printing directly on different sizes of paper:

You can download these (in Microsoft Windows, right-click and select). To print in Microsoft Windows, right-click on the downloaded file (in File Explorer) and select. Or open it in a photo- or image-processing program to use that program's features such as borderless printing.

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.

Circadian Sleep Disorders Network

The first time you go to smile.amazon.com you will be asked to confirmas your charity. 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 several contribution checks 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.



Recently Added References

This is a list of refences added to our Info page since the last newsletter. The newsletter lists references added since the previous newsletter. These are generally available to members only.

This web site is intended to provide generic information about Circadian Rhythm Sleep Disorders, 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.







Office: 4619 Woodfield Rd, Bethesda, MD 20814

Phone: By appointment only, please.