Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Mission
What Are CRSDs?
*** Join! ***
*** Take the Survey! ***
Help Spread Awareness
 
News Items
CSD-N New Secretary
Write Congress Now!
CSD-N Seeks Sleep Labs
Board Seeks Candidates
Nobel Prize for CR Genes
NORD Non-24 Article
DC Area Support Group
New Listings
PatientsCount Network
DSPS Interview (Dutch)
Beth Macdonald
Website Converts To HTTPS
Early Survey Results
Archived News
 
More About Us
Email List
Brochure
Q&A Docs (FAQs)
Basic Fact Sheet
Infographic
Find a Doctor
 
Merchandise
Start School Later
Amazon to Donate to CSD-N
Welzoo to Donate to CSD-N
Websites Link to CSD-N
Recently Added References
  (members only)
Disclaimer
Facebook, LinkedIn, Twitter
Media Kit
Our Email & Office
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, 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.

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.

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. Sign up now (free), and please take the survey.

Note that the signup questions are not the survey! Part of the signup process with AltaVoice involves answering some 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, which asks about your circadian disorders, sleep habits, treatment, and other disorders.

For more information, 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 AltaVoice (website) or emailing Circadian Sleep Disorders Network for further information.

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 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 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 Welcomes New Secretary/A>

Jen Heller Meservey Oct 23, 2017
CSD-N Board of Directors welcomes our new secretary, Jen Heller Meservey. Thanks, Jen, for volunteering to help.

Tell your Members of Congress why sleep disorders research is critical

Oct 2017
Right now, Congress is deciding on federal funding for various programs and activities in FY2018, including programs that distribute funding to talented researchers at leading academic medical centers.

Sleep disorders impact millions of Americans (including veterans), and it is essential that Congress continue to support vital funding for sleep research. However, it is up to us to educate our legislators on how sleep disorders impact our lives.

Your voice matters! Project Sleep's president & founder, Julie Flygare, will be on Capitol Hill in November with other sleep community leaders and THEY WILL HAND DELIVER LETTERS from you to your Members of Congress at their DC Offices!

Submit Your Letter:

  1. DOWNLOAD THIS LETTER and add your name, address and story.
  2. Save it to your computer with a title like "My Letter to Congress".
  3. Email your completed letter to info@project-sleep.com. (Please do not send your letter directly to your Members of Congress, e-mail is often routed away from key staff and mailed letters go through extensive security screening for over a month.)
  4. Act now! Deadline is Friday, Oct. 27th.

Why Take Action:

Here's a video from Julie Flygare, who is organizing this campaign, telling us why this is urgent. But please use the CSD-N version of the letter.

Please submit your letter today, because the Oct. 27th deadline is quickly approaching. If you have any questions, please e-mail info@project-sleep.com. Thanks to Project Sleep for initiating this campaign. And thank you for your support,

CSD-N Seeks Sleep Labs That Accommodate Our Hours

Patient wired for sleep study Oct 2017
CSD-N is looking to create a list of sleep labs that will accommodate sleep tests (polysomnograms) at our unusual sleep hours. We believe that a lot of the diagnostic value of a polysomnogram is lost when you aren't sleeping at a time determined by your body's internal clock. So It would be of great value to our community to know which labs will adjust to allow patients to sleep at the time appropriate for them.

If you know of such a lab, please send the information to

Thanks to Karen Martin for initiating this project.

The goal is to post a list of sleep labs, analogous to our doctor list. And, by the way, if you can recommend a doctor who is knowledgeable about DSPD and/or Non-24 (and isn't already on our list), please send us that information too.

CSD-N Board Seeks Candidates

Oct 2017
Circadian Sleep Disorders Network will be holding elections for its Board of Directors, and is seeking some new faces. Requirements are described in www.circadiansleepdisorders.org/docs/ReqDir.php. Meetings are held by online forum, so you can log in at any time of day to participate. Meetings do continue for a month or more, requiring you log in once every day or two during that time..

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, 2018.

We are also looking for a new secretary, and other volunteers willing to help out. The secretary can be a board member but does not have to be. The main duty of the secretary is to write up minutes of the meetings, which are held by online forum. If you're interested, please let us know soon, by email sent to .

Nobel Prize for Circadian Rhythm Genetics

Circadian Genes Oct 2, 2017
The Nobel Assembly at Karolinska Institutet has awarded the 2017 Nobel Prize in Physiology or Medicine jointly to Jeffrey C. Hall, Michael Rosbash, and Michael W. Young for their discoveries of molecular mechanisms controlling the circadian rhythm.

"[Dr.] Young said that one of the most important areas of study built on their work is what happens when the clock runs too fast or too slow. Most recently, scientists have discovered that one percent of humans worldwide have a mutation in the clock genes that is associated with delayed sleep or being a night owl. He said many of these individuals show up at sleep clinics wondering what to do, and the work provides a target to work on."
Washington Post, Oct 2, 2017

NORD Non-24 Article Updated

Sept 2017
Our vice president James Fadden and Dr. Katherine Sharkey have completed an update of their report on Non-24-hour sleep-wake disorder for the National Organization of Rare Disorders (NORD). You can read it at https://rarediseases.org/rare-diseases/non-24-hour-sleep-wake-disorder/.

In 2012 CSD-N requested that NORD include Non-24 in their database of rare disorders. James Fadden wrote the original report for the database along with Dr. Sharkey of Brown University. It was published in 2013.

The updated report contains new information published during the last four years. There are new sections on Differences in Cellular Clock Function and on Genetics, as well as other changes throughout the report. There are also many new references.

It is probably the most thorough reference available on the symptoms, physiology, and causes of both blind and sighted Non-24. The report discusses treatments but not in the same degree of detail. That is the policy of NORD which prefers their reports to focus on descriptions of the disorders rather than treatments.

DC Area Support Group Forming

Sept 2017
Circadian Sleep Disorders Network is setting up a venue for circadian rhythm disorder (CRD) people in the local DC/MD/NoVA area to meet others with CRDs. Depending on interest, this may become a regular support group.

    When: Monday, October 23, starting at 7:00 pm
    Where: Holy Cross Hospital
1500 Forest Glen Road
Silver Spring, MD
301.754.7907
Education Room #3
The meeting will last for an hour or two depending on people's interest.

Note that there is a parking fee of $2 per hour at the hospital. The hospital is half a mile from the Forest Glen Metro station (red line) - some folks may prefer to come that way. If there is interest, and people are willing to arrive sufficiently early, a volunteer could pick a few people up at the Metro stop and drive them back afterwards. Please let us know in advance if you would like to be picked up from the Metro station ( ).

We would like some idea of how many people plan to come. Please let us know ( ) if you are planning to come, or if you would like to meet in the future but can't make the date or place this time.

People at the Narcolepsy Network conferences often mention how empowering it's been for them to meet other people with the same disorders and similar challenges and struggles.

Thanks to Kathy Shartzer, who volunteered to find us a place to meet, and made the arrangements with the hospital.

CSD-N Added on Other Websites

A link to our website has been added to the Netherlands Sleep-Wake organization Nederlandse Vereniging voor Slaap- Waak Onderzoek (NSWO), thanks to efforts by our secretary, Annechien Foeth.

And the Société Française de Recherche et Médecine du Sommeil (SFRMS) is promoting our registry on Facebook and Twitter, thanks to one of our volunteers. Unfortunately, their Facebook page is only visible to people in France (or perhaps the EU?), not in the U.S.

CSD-N Joins PatientsCount Network

PatientsCount Logo CSD-N has joined the PatientsCount Network, a directory of organizations, which is available to patients and researchers. You can see our organization profile here.

Annechien's DSPS Interview

Annechien's Video CSD-N secretary Annechien Foeth was interviewed about DSPS. You can watch the video here. It is entirely in Dutch. YouTube can provide subtitles in a language of your choice: click on CC, then Options/Subtitles/Autotranslate/English (or whichever language you choose). It's still quite garbled - I suspect the auto-transcriber didn't transcribe some of the Dutch words correctly, let alone subsequently feeding it to an imperfect translation program. We're happy to be raising awareness wherever we can.

Beth Macdonald

Aug, 2017
Beth Macdonald With great sadness I have to report the death of Beth Macdonald. I've known Beth on the Niteowl email list for over 15 years. She was an active participant, welcoming new people and sharing her experiences with delayed sleep phase. She was one of the founders of Circadian Sleep Disorders Network back in 2011, and served on its Board of Directors ever since. She posted frequently on various Facebook groups (as Nina Beth), and was supportive of new group members and often answered their questions about CRDs. She maintained the accuracy of various circadian sleep disorder entries in Wikipedia, and often wrote journalists and others about inaccuracies in their articles on sleep. And she was a friend.

More details from her sister:

She was born to William and Alice Macdonald in Seattle, WA on June 10, 1942. She had a brother born in 1945, and a sister born in 1949. The family lived in Anchorage, AK, Friday Harbor, WA, Renton, WA, and Seattle, WA. Neena graduated from Roosevelt High School in Seattle. She was active in the Mountaineers (skiing, hiking, climbing) and Skandia Folkdance Club, and performed with Nordiska Folkdance while in Seattle. She moved to Norway in 1971. She remained in Norway with occasional visits "home" to visit family and friends in the US. She was a teacher, had a large online presence in groups including genealogy and circadian sleep disorders, and she was a good friend to many. She died on July 6, 2017 in Bergen from complications related to cancer.

CSD-N Website Converts To HTTPS

CSD-N has implemented the secure HTTPS protocol for all of its website. This means that website content is encrypted prior to transmission, and any user content (such as when you join) is encrypted prior to transmission to us. This is handled behind the scenes by your browser. Many browsers display a lock symbol in the address bar to confirm this. (Note that even before this change, any financial information you submitted to PayPal was encrypted by virtue of being sent directly to PayPal. Same for registry/survey information, which went directly to AltaVoice.) Prior to this change some browsers issued security warnings when users entered the password to retrieve member information. The change to https fixes any insecurity, so these warnings should no longer appear.

All our URLs (web addresses) now start with https: instead of http:, but the rest of the URL is unchanged.

Any links you saved previously will continue to work, but will automatically be redirected to use the encrypted communication.

Some Preliminary Survey Results

Survey home page Circadian Sleep Disorders Network, in partnership with AltaVoice, a wholly owned subsidiary of Invitae Corporation, is sponsoring a registry and survey. Please take the survey, if you have not already done so. We need more participants to be able to find connections between answers, for example whether perceived sensitivity to light can predict which treatments work best. And researchers want more participants so they can select people with the characteristics they want to study.

Here are some highlights of the preliminary results:

View more results, with numbers and charts, at www.circadiansleepdisorders.org/registry/survey_results_prelim.php. These are preliminary results based on responses of the 208 people who have completed the survey as of May 28.

For more information on the survey itself, see www.CircadianSleepDisorders.org/registry/registry.php.

Archived News

Archived News 2017
Archived News 2016
Archived News 2015
Archived News 2014
Archived News 2013
Archived News 2011 - 2012 (incomplete)

More About Us

Niteowl Email List

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 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 at www.circadiandisorders.org/list.

Rules

There are some rules:
The rules that the list software enforces are

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 you your incoming Niteowl list emails go to). Your password will be sent to you.

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

image of brochure cover 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.

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 (FAQs)

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 DSPS and the other for Non-24:

DSPD 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:

Spanish:     DSPS Preguntas y Respuestas - web     printer    
     No-24 Preguntas y Respuestas - web     printer    
German:     DSPS F&A - web     printer    
     Non-24 F&A - web     printer    

Our Basic Fact Sheet

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.

Our Infographic

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

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 confirm Circadian Sleep Disorders Network as 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.

Welzoo Will Donate to CSD-N

Sign up at Welzoo by clicking here. Thereafter, every time you go to their home page, http://www.welzoo.com, Circadian Sleep Disorders Network gets a penny. They're paying for you to view their advertisements. Make it your browser's startup page and watch the contributions add up!

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.

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.

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.



Contact:  
Email:

Office: 4619 Woodfield Rd, Bethesda, MD 20814
Phone: By appointment only, please.

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© 2017 Circadian Sleep Disorders Network
Last modified Nov 15, 2017
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