Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Mission
What Are CRSDs?
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Help Spread Awareness
 
News Items
Student Project
Genetic Study at Rockefeller U
SLEEP 2018 Conference
CSD-N Registry Listed
Beth on Wikipedia
NIH SDRAB Meeting
CSD-N at AAHS Summit
AAHS Advocacy Summit
GDPR Update
Archived News
 
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Email List
Brochure
Q&A Docs (FAQs)
Basic Fact Sheet
Infographic
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Start School Later
Amazon to Donate to CSD-N
Recently Added References
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Disclaimer
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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.

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, 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 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

Eighth Grader Features Circadian Rhythm Sleep Disorders

Booth at the School Fair

Oct 2018
Elizabeth McDougall, eighth grader and recipient of the Edward R. Foley Citizenship Prize at Derby Academy in Hingham, Massachusetts, is doing her community project on Circadian Rhythm Sleep Disorders. She is spreading awareness of these disorders and raising money for Circadian Sleep Disorders Network. Her interest springs from being close to someone with Non-24-Hour Sleep-Wake Disorder and seeing how difficult that disorder can be.

She set up a booth at their school's Fall Fair on October 13, 2018. She reports in part:

Despite the 47-degree temperature, rain, and wind, I was able to speak to quite a few people about circadian rhythm disorders and your organization. One woman has a brother who sleeps all day and is up all night, but has never had a sleep study. She took a brochure and will look for a doctor in his area and try to get him some help.
Elizabeth will be raising awareness of our disorders and doing some fundraising during the school year. We are grateful for her help and look forward to further progress reports.

Genetic Study at Rockefeller University

by Alexandra Wharton

Oct 2018
Rockefeller University's Laboratory of Genetics is seeking participants for its ongoing study, Deciphering the Molecular Basis for Circadian Rhythm Sleep Disorders. The lab is researching changes in genes that can influence the internal clock that controls sleep timing. The goal of the study is to understand what makes some people sleep at times that are different from traditional hours.

CRY1 gene mutation inheritance (conceptual) Last year, this lab, along with researchers in Turkey, discovered the CRY1 gene mutation in humans. It is one of the causes of Delayed Sleep Phase Disorder. This gene mutation causes carriers' body clocks to run longer than is typical - giving them the feeling of perpetual jet lag when they keep "normal" hours such as a 9 to 5 workday. Compared to non-carriers, carriers of this gene mutation experience nighttime sleep delays of 2-2.5 hours. "Carriers of the mutation have longer days than the planet gives them, so they are essentially playing catch-up for their entire lives," explains Alina Patke, a research associate in the lab.

By accessing a database of sequenced genomes of people from around the world, researchers were able to interview those with the CRY1 mutation and confirm that they experience altered sleep patterns. It's the first time scientists concluded that a wide range of people with the CRY1 variant - who are NOT blood relatives - have the symptoms of a circadian sleep disorder.

Please consider participating. There is no cost to participate, nor is there any compensation. Participants do NOT need to be in the New York area - the lab work can be done remotely. Participants must be 18 or older.

If you are interested in participating, contact the research study lead, Dr. Alina Patke at patkea@rockefeller.edu. She will send you an informed consent form, a HIPAA form and schedule a phone call with you. During the call, you will have a chance to ask questions about the study. If you are interested in enrolling, you are required to sign the consent and HIPAA forms. Once you have returned these signed forms, you will receive a study questionnaire about your sleep, demographics and basic health; a sleep log for 14 consecutive days; and a saliva sample collection kit. After these materials have been sent in, the researchers may follow up with you by email or phone. You can decide to withdraw from the study at any time.

This is an experimental study. It is to contribute to research and is not for personal diagnosis; the results cannot be released to participants or their doctor. There is no direct benefit to participating in this study. Instead, participants may benefit in the future from what is learned in the study. From time to time, the lab will make available a summary of interesting or general findings from this project describing how they contribute to our understanding of sleep disorders.

SLEEP 2018 Conference

Lynn McGovern at SLEEP2018 June 3-6, 2018
CSD-N board member Lynn McGovern attended the SLEEP 2018 conference in Baltimore June 3 - 6. This is the major sleep conference for sleep researchers in the U.S. Lynn lives in Ireland and is five hours ahead of us. She also has DSPD. However, thanks to the time difference, she was able to attend both morning and afternoon sessions. She focused her attention primarily on talks related to circadian disorders. Lynn has spent considerable time writing up some of these talks, so that those of us who couldn't make the morning sessions can read about the conference and stay up-to-date on the research.

A brief excerpt from Lynn's conclusions: They also talked about the epidemic of sleep deprivation. Yet start times are changing only in schools. It seems nobody is connecting the dots and realising that work start times also need to change. There need to be large policy changes everywhere.

CSD-N Registry/Survey Listed on AHRQ Research Database

Registry on AHRQ July 2018
AHRQ, the Agency for Healthcare Research and Quality (within the U.S Dept of Health and Human Services) maintains detailed information on patient registries for use by researchers, as part of its Clinical Trials database. Circadian Sleep Disorders Network's registry and survey has now been added to their database, making it readily available to researchers seeking study subjects. Our entry has been posted. Anyone can search the entire Registry of Patient Registries (RoPR) at https://patientregistry.ahrq.gov.

And if you haven't yet: please REGISTER and TAKE THE SURVEY. The survey results will inform researchers about our situations and experiences, using de-identified data, and the registry allows researchers to request participants to contact them. (Your contact information is not given out unless you respond to their request, which is routed through the survey host, Invitae, using a de-identified ID number.)

We often complain that so little research has been done on the people suffering from Circadian Rhythm Sleep Disorders. One reason is the difficulty researchers have in locating people with these disorders. This is your chance! You can make a difference!

Recognition for Beth's CRD Contributions to Wikipedia

Beth Macdonald June 2018
Beth Macdonald (Nina Beth on Facebook), one of the original founders of Circadian Sleep Disorders Network, and who passed away last year, has been recognized in an article in the Journal of Biological Rhythms for her work on the Wikipedia articles on circadian rhythms. Our vice president James Fadden has written a blog post quoting and summarizing relevant portions of the article and with some of the back story. Beth had actively maintained the Wikipedia articles on circadian rhythm, delayed sleep phase syndrome, non-24-hour sleep-wake disorder, and related topics, to be sure that the information was scientifically supported and to eliminate opinions belittling these disorders. James has volunteered to continue this maintenance.

NIH SDRAB Meeting

NIH SDRAB meeting June 21-22, 2018
Susan Plawsky represented the circadian sleep disorders community at the NIH SDRAB (Sleep Disorders Research Advisory Board) on June 21 and 22. The SDRAB was fleshing out the new Sleep Research Plan, and Susan and the other three patient representatives did a great job pushing for greater emphasis on disorders (not just normal sleep) in the plan. You can read Susan's presentation here. CSD-N president Peter Mansbach, vice president James Fadden, and member Alexandra Escalera attended in the audience and spoke up in support. Peter also got the board to support adding information on circadian rhythm sleep disorders to the NIH web pages (that information is still not there).

CSD-N Speaks at AAHS Sleep Advocacy Summit

Lynn and Peter at AAHS Summit Peter Mansbach speaking at AAHS Summit June 5, 2018
Board Member Lynn McGovern and President Peter Mansbach represented Circadian Sleep Disorders Network at the American Alliance for Healthy Sleep (AAHS) Sleep Advocacy Summit. AAHS is a recently formed offshoot of the American Academy of Sleep Medicine (AASM). This Summit brought together representatives of a number of patient advocacy organizations representing various sleep disorders. Peter gave a five minute introduction to Circadian Sleep Disorders Network, including definitions of our disorders and reference to our patient registry and survey (text, slides).

Lynn is also attending the AASM's annual multi-day SLEEP conference. Since she traveled from Ireland for the conference, her body was still on Ireland time and she was able to be up for morning talks despite her DSPD. She will report on that conference separately later.

AAHS Sleep Advocacy Summit Summary

This summary was provided by AAHS

June 5, 2018
The American Alliance for Healthy Sleep (AAHS) hosted a Sleep Advocacy Summit on June 5, 2018 during SLEEP 2018 in Baltimore, Maryland. This Summit provided an opportunity for the leadership of sleep advocacy organizations to meet, learn more about each organization, and discuss issues of importance to the entire sleep advocacy community. Thank you to all attendees for your time and participation and our sincere gratitude to all parties that contributed to the planning and success of the Summit.

In attendance at the Summit were 25 attendees from 9 organizations, including:

Each organization presented an introduction to their organization with information regarding current projects, success and challenges the group has faced. This allowed attendees to gain an understanding of each organization's purpose and activities, as well as the populations they serve....

It is clear that all the organizations present at the Summit passionately serve sleep disorders patients, whether individuals with a specific sleep disorder or across the entire spectrum of sleep disorders. While there may be overlap in terms of patients served, all organizations provide valuable, unique programs and services to sleep disorders patients.

Although some issues or needs are disorder specific, the Summit highlighted that increased awareness for sleep disorders, both in general and for each specific sleep disorder, is needed to increase awareness and detection of sleep disorders both with the general public, as well as segments of the medical community, such as primary care physicians. The opportunity exists for the various sleep advocacy organizations to work together to collectively spread greater awareness of sleep disorders.

GDPR Update

May 2018
The General Data Protection Regulations (GDPR) took effect in the European Union, and covers our EU members. We have always repected our members' privacy, and our use of member data has not needed to change. We are clarifying our privacy practices, as required by the GDPR. These practices apply to all our members, not just those in the EU.

Archived News

Archived News 2018
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 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

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.

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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© 2018 Circadian Sleep Disorders Network
Last modified Oct 17, 2018
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