Contact Information
Email: 
Board of Directors Email
Office: 4619 Woodfield Rd, Bethesda, MD 20814
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.
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 an all-volunteer organization. None of the board members or officers is being paid. We are using our funds for expenses, such as the cost of applying for tax exempt status, printing costs, web costs, etc.
We see this as an international endeavor. While initially most of our activity will occur in the U.S., the information on our web site is available world-wide, and our brochures will be useful to English-speakers everywhere. The research we encourage will be useful world wide. In the future we hope to sponsor affiliated groups in other countries.
All our directors and officers are volunteers. We are not paid for our work.
Expiration dates are for board membership. All officer terms expire in January of even-numbered years.
Officers | |||
President:Peter Mansbach, PhD Founder and Webmaster Bethesda, MD, USA |
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term expires 1/2026 |
Executive Vice President:Vacant |
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Vacant | |
Vice President for |
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term expires 1/2025 |
Treasurer:Asli Kumcu Belgium |
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(not currently a board member) |
Other Board Members | |||
Samuel Bearg Concord, MA, USA |
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term expires 1/2026 |
Andrew Cowen Rockford, IL, USA |
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term expires 1/2025 |
Sarah Hazelwood Somerville, MA, USA |
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term expires 1/2026 |
Leslie Head Decatur, GA, USA |
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term expires 1/2025 |
Maggie Leppert Ramsey, NJ, USA Newsletter Editor |
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term expires 1/2025 |
Lynn McGovern Naas, County Kildare, Ireland |
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term expires 1/2025 |
Alexandra Wharton Austin, TX, USA Social Media Liaison NIH SDRAB Rep |
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term expires 1/2025 |
Participating on our Medical Advisory Board are:
Articles of Incorporation, Aug 18, 2011
Bylaws
Motions Passed by the Board *
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Around 1996 Wendi Dunlap started an email list at circadiandisorders.org/list for people with Circadian Rhythm Sleep Disorders. The list has grown to over 800 members, primarily people with DSPS or Non-24 or their family members. Some people on the list felt we needed a more formal organization to promote awareness of CSDs, and to advocate for accommodations. Circadian Sleep Disorders Network is the result. We incorporated on August 18, 2011, and opened to membership on January 1, 2012.
We quickly set up a web site, adopted bylaws, expanded the Board of Directors, elected officers, set up finances and accounting, defined membership, integrated dues payments with PayPal (you can write a check instead, if you prefer), applied for and received tax-exempt status in the U.S., and filed tax returns. We formed a Medical Advisory Board, expanded the web site, and formally affiliated with the Niteowl Email List.
We have established a patient registry and survey, which is ongoing. We found interesting (and surprising to some) results from the survey, and are in the process of getting them published. We developed a Needed Research document as input to an AASM/SRS/SRBR White Paper.
We have established a presence on various social media, and persuaded NIH (U.S. National Institutes of Health) to include Circadian Rhythm Sleep Disorders on the sleep-related pages of its website. We have spoken about our disorders at various conferences, been interviewed on the radio and for magazines, and lobbied Congress for more sleep research funding.
We are developing programs and strategy, and embarking on the goals in our mission. There's still a lot to do! Some current activities are reported in the News section of our Home Page.
We are not requiring members to provide any more personal information than they are comfortable providing. However, if you did not give us a valid email address, we would not be able to contact you at all, so we do require that. We ask for but do not require home address for future use if we go to printed newsletters, or to select people to invite to local support groups near them if/when we start.such groups.
If you pay using PayPal, only PayPal gets your payment data (bank account or credit card). We never see this information. We can view the name and email address you provide to PayPal, and in some cases the street address as well, but we will not make use of this. You may also pay by check. We will not retain any bank data from the check once it has been deposited and the deposit has been accepted.
In keeping with the principles set out in the GDPR, we at Circadian Sleep Disorders Network will use your email address, your name, and your address to keep in touch with you, based on what the regulation details as "legitimate interest".
We use your membership data to send email newsletters, other occasional items of interest, and renewal reminders. We do not send advertising for any other organization or company. In the future we may decide to send hard copy newsletters by postal mail.
We expect to send renewal reminders and perhaps some especially important news notes for three years after your membership lapses. After that, we will stop sending you email.
When we start local support groups we may extract email addresses of people in the vicinity, in order to notify them.
We take your privacy seriously. We understand that you may not want your membership in Circadian Sleep Disorders Network to be public information, and we take every precaution to keep your data private. We will never sell or give away our membership information. That promise is enshrined in our bylaws!
Our membership list is private, and only accessible by the few people with a need to know. Currently, that is the president, vice president, secretary, treasurer, and newsletter editor, since they need to process your membership dues, email the newsletters and election ballots, etc. If in the future they are assisted by other individuals, those others may be given access to membership information, but only by explicit vote of the Board of Directors.
If you want your personal data to be removed entirely (the "right to be forgotten"), you may request that by sending email to , and we will remove your personal information from our database (in Google Docs) and from MailChimp. For accounting purposes we need to retain your payment history, but it will no longer be connected with a name or other identifying information. We cannot remove email addresses from previous elections from the election-processing host. We cannot remove information from PayPal.
We have created a patient registry and survey in partnership with Invitae Corp, and strongly encourage our members to register and to participate. The personally identifying data you provide is between you and Invitae, the registry hosts. We at Circadian Sleep Disorders Network do not see any personally identifying information in conjunction with the data. We do have access to your answers to the survey questions, but without knowing who those answers are associated with. If you explicitly allow Invitae to share your email address with us, they do so, but that is completely separate from the survey. We cannot connect your email address with your survey answers.
The privacy of your personally identifying information is determined by Invitae. They agree to abide by HIPAA regulations (U.S.) and GDPR (E.U.). You may request deletion of your data from Invitae, and your personal information will be deleted, but any de-identified data that is already in process of being analyzed can not be recalled.
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.
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.
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 (using the password you created when signing up for the email list) at
www.circadiandisorders.org/list.
There are some rules:
The rules that the list software enforces are
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.
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.
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.
For more (or more current) help on list commands, send email to
niteowl-request@lists.circadiandisorders.org
with HELP in the subject line.