Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Mission
What Are CRSDs?
*** Join! ***
*** Take the Survey! ***
Find a Doctor
Help Spread Awareness
 
News Items
CSD-N Attends WODC
Potential DSPD Drug
CSD-N Supports Later School Start Times in Texas
Letter to Congress
Social Media Liaison
NIH Website Campaign Update
CSD-N Board Election Results
CSD-N Board Election
CSD-N on Sleep Research Panel
Seeking Board Candidates
Student Project
Genetic Study at Rockefeller U
Archived News
 
More About Us
Email List
Brochure
Q&A Docs (FAQs)
Basic Fact Sheet
Infographic
 
Merchandise
Start School Later
Amazon to Donate 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.

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 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 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 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 Attends World Orphan Drug Congress

Apr 2019
Our president, Peter Mansbach, was invited to attend the 2019 World Orphan Drug Congress USA at National Harbor, MD. This is sponsored by companies working on solutions for rare diseases, and rare disease organizations including NORD and EURORDIS. There is increasing emphasis on including patient perspectives in all stages of pharmaceutical research, including setting treatment goals ("endpoints") and finding patients for trials. Peter participated in a round table discussion on endpoints, and attended several talks. WODC Panel Discussion

Hetlioz To Be Tested For DSPD

Mar 2019
Vanda Pharmaceuticals is planning Phase II trials this year for Hetlioz® as a treatment for DSPD (Delayed Sleep Phase Disorder). Hetlioz is already approved (in the U.S.) for treatment of Non-24-Hour Sleep-Wake Disorder, in both blind and sighted individuals. Hetlioz is the brand name of tasimelteon, which is a melatonin agonist (i.e. it works similarly to melatonin).

CSD-N Supports Later School Start Times in Texas

Mar 2019
CSD-N board member Alexandra Wharton called our attention to a bill pending in the Texas legislature that would require schools in Texas to start no earlier that 8:00 am, and suggested we write a letter of support. You can read that letter here.

CSD-N Signs Letter to Congress

Feb 2019
CSD-N, along with other sleep organizations, has signed on to a letter requesting the U.S. Congress to restore funding to the CDC (Center for Disease Control and Prevention [U.S.]) dedicated to sleep research and awareness. You can read the letter here. Thanks to Julie Flygare at Project Sleep for pulling together all these sleep organizations.

New Social Media Liaison

Alexandra Wharton Jan 2019
New CSD-N board member Alexandra Wharton has been appointed as CSD-N's Social Media Liaison. She will take charge of our Twitter feed and LinkedIn page, and may contribute to our Facebook page and other social media outlets as she sees fit. Thanks to Jennifer Silvia, our previous social media liaison, who handled these duties in the past.

Campaign to get CRDs on NIH Website - Update

Jan 2019
Peter Mansbach speaking at NIH SDRAB For SIX YEARS we have been trying to get Circadian Rhythm Sleep Disorders (CRSDs) listed and documented on the NIH website. That campaign came to a head at the SDRAB (U.S. NIH Sleep Disorders Research Advisory Board) meeting on Friday, Jan 18. We had a half hour segment on the agenda at 1:30 pm to present our case and to hear from the OSPEEC (Office of Science Policy Engagement, Education, and Communications - the office which controls the website) which has in the past been unresponsive. Peter Mansbach (in photo) presented brief arguments and history, which is posted at https://www.circadiansleepdisorders.org/docs/NIH-SDRAB-website.php. That document includes a proposed resolution that was to be presented to the SDRAB, and which included our proposal for minimum web content.

Our arguments were well received, both by the SDRAB and the OSPEEC. The director of OSPEEC assured us that they are in full agreement. Their content person said they are working to make the website more accessible and discoverable, with new central pages to assist navigation. Peter expressed concern that our additions were being deferred for other design goals, when our proposed content can fit seamlessly into the present design and still be used as topics get rearranged. The director assured us that the "process [for including CRSDs] has begun", and our new elements can be develped concurrently. However, it sounded like it would take at least 6 months to get anything posted, and probably longer. It's a large bureaucracy.

Susan Plawsky, our CSD-N representative on the SDRAB, spoke in support. Linda Secretan, the patient representative for Restless Legs Syndrome (RLS), gave a strong statement of how helpful it has been to the RLS community to have RLS on the NIH website - it's validation of a disorder that many people otherwise just find amusing. Dr Sairam Parthasarathy and others spoke in support. It was felt unnecessary to formally vote on our proposed resolution, since we had so much support from the SDRAB.

Dr Michael Twery at NIH SDRAB The bulk of the meeting, of course, was devoted to the details of developing the next Sleep Disorders Research Plan, optimistically scheduled to come out this June. Many thanks to Susan Plawsky for continuing to represent CSD-N and the Circadian Rhythm Sleep Disorders community in this endeavor. The photo is of Dr. Michael Twery, director of NCSDR (National Center for Sleep Disorders Research) addressing the SDRAB. In the foreground are Dr Aaron Leposky, NCSDR staff, and Dr Gabriel Haddad, current chair of the SDRAB.

CSD-N Board Election Results

Dec 2018
Election to the CSD-N Board of Directors has concluded. The following people have been elected (or re-elected) to the board:

Welcome to the new board members. They start serving Jan 15. And thanks to all who ran.

CSD-N Board Election 2018

Nov 2018
Five candidates have volunteered to run for Circadian Sleep Disorders Network Board of Directors. All have been formally nominated by the current board. Two are incumbents: James Fadden, our vice president and a founder of the organization, and Lynn McGovern, our newsletter editor. The other three, Alexandra Wharton, Kalle Widell, and Kevin Williams, would be newcomers to the board.

There are four openings on the board, and the four highest vote-getters will be elected, so your vote counts! All dues-paying members current as of Nov 20 are eligible to vote, regardless of whether your membership expires in 2018 or 2019. Members should receive ballots by email, from BallotBin.com, on or about Dec 1. Voting closes on Dec 15. Results will be announced shortly after. New board members take office at start of the next regular meeting, which begins Jan 15, 2019.

The candidates have submitted statements supporting their candidacy. These are listed here.

CSD-N on Panel at Sleep Research Network Conference

SRN Logo Oct 2018
Our president, Peter Mansbach, was invited to participate in a panel discussion at the Sleep Research Network (SRN) conference in Bethesda, MD, October 29 - 30, 2018. There were about 50 people in attendance. The focus of the conference was cohort studies, which provided an opportunity to introduce our registry and survey to the assembled research community.

The panel consisted of five industry representatives and Peter. Other patient reps were unable to attend. Rather than focusing only on circadian disorders, Peter spoke on behalf of all sleep patients by calling attention to the overlap among the various sleep disorders. Pigeonholing patients into having EITHER narcolepsy OR sleep apnea OR delayed sleep phase is likely to result in less satisfactory treatment.

In a separate segment of the program several researchers were asked to present a quick 90-second overview of their ongoing work. Peter introduced a few of the preliminary results from our survey data.

It is gratifying to see how many people are engaged in sleep research, including a number in circadian rhythm sleep disorders research.

Call for Candidates for Board of Directors

CSD-N logo Oct 2018
Circadian Sleep Disorders Network will be holding elections for its Board of Directors and is seeking some new faces. Requirements are described here. Meetings are held by online forum, so you can log in at any time of day to participate. These online meetings can continue for two months or more, since normally people log in no more than once a day to contribute to a discussion.

If you're interested, please email as soon as possible. Just send a short paragraph (preferably less than 300 words) about why you would like to serve, referencing any skills or experience that might be useful to us, such as writing, public relations, fundraising, law, accounting, healthcare, and non-profit experience.

In order to introduce the candidates to the voting members, your paragraph will be used in the newsletter sent out prior to the election, and on the election ballot. This election will be held online during the first two weeks in December, with current CSD-N members voting from the list of candidates. Directors start serving January 15, 2019.

We are also looking for volunteers. If you're interested, please send an email to the above address.

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.

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 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.



Contact:  
Email:

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

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© 2019 Circadian Sleep Disorders Network
Last modified Apr 12, 2019
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