Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
 
ON THIS PAGE (links):
Top
Our Email & Office
Mission
Organization
Board of Directors
Medical Advisory Board
Organizational Docs
History
Privacy Policy
Email List
Media Kit

Contact Information

Email:
Board of Directors Email
Office: 4619 Woodfield Rd, Bethesda, MD 20814

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.

Organization

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.

Our Board of Directors

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
  Peter Mansbach term expires 1/2026

Vice President:  

James Fadden
Founding member
Potomac, MD, USA
  James Fadden term expires 1/2025

Secretary and
Newsletter Editor:

Naomi Mittet
Seattle, WA, USA
Naomi Mittet term expires 1/2025

Treasurer:

Asli Kumcu
Belgium
Asli Kumcu (not currently a
board member)

Other Board Members

Samuel Bearg
Concord, MA, USA
Samuel Bearg term expires 1/2026
Andrew Cowen
Rockford, IL, USA
Andrew Cowen term expires 1/2025
Sarah Hazelwood
Somerville, MA, USA
Sarah Hazelwood term expires 1/2026
Leslie Head
Decatur, GA, USA
Leslie Head term expires 1/2025
Lynn McGovern
Naas, County Kildare, Ireland
Lynn McGovern term expires 1/2025
Alexandra Wharton
Austin, TX, USA
Social Media Liaison
NIH SDRAB Rep
Alexandra Wharton term expires 1/2025

Other web sites maintained by members of our board

delayed2sleep - An ongoing blog about DSPS and N24
A web page describing DSPS, with additional links
A blog post about Non-24
Delayed Sleeper - A blog about DSPD

Thanks to our former board members for their past service:

Requirements for Directors and Officers

Medical Advisory Board

Participating on our Medical Advisory Board are:

Dr Sabra M Abbott, MD, PhD
Assistant Professor of Neurology (Sleep Medicine)
Northwestern University Feinberg School of Medicine

Prof Steven A Brown, PhD
Chronobiology and Sleep Research Group, Zurich University

Dr Mary A Carskadon, PhD
Professor, Department of Psychiatry & Human Behavior, Brown University

Dr Daniel A Cohen, MD
Neurologist, Sentara Sleep Center, Sentara Norfolk General Hospital

Dr Charles A Czeisler, PhD, MD, FRCP
Chief, Division of Sleep Medicine, Brigham and Women's Hospital
Director, Division of Sleep Medicine, Harvard Medical School

Prof Yaron Dagan, MD, PhD
Professor, Department of Human Biology
Chronobiology Research Center, University of Haifa, Israel

Dr Charmane I Eastman, PhD
Professor, Biological Rhythms Research Laboratory, Rush University Medical College

Dr Elizabeth B Klerman, MD, PhD
Associate Professor of Medicine, Harvard Medical School
Physician, Division of Sleep and Circadian Disorders, Brigham and Women's Hospital

Dr Steven W Lockley, PhD
Associate Professor of Medicine, Harvard Medical School
Neuroscientist, Division of Sleep Medicine, Brigham and Women's Hospital

Dr Katherine M Sharkey, MD, PhD
Assistant Professor, Departments of Medicine and Psychiatry & Human Behavior
Brown University

Dr Robert J Thomas, MD
Circadian Rhythm Disorders, Cognition in Sleep Disorders, Central Sleep Apnea
Associate Professor of Medicine, Beth Israel Deaconess Medical Center

Dr Phyllis C Zee, MD, PhD
Professor of Neurology (Sleep Medicine)
Northwestern University Feinberg School of Medicine

Organizational Documents

Articles of Incorporation, Aug 18, 2011
Bylaws
Motions Passed by the Board *

Our IRS Form 1023 Application for Tax Exempt Status is accessible by request to .

Requirements for Directors and Officers
Information for Board Members *
Calendar of Regular Yearly Board Events and Obligations (gmail calendar) *
Calendar of Regular Yearly Board Events and Obligations (text version) *

* requires member password

Some History

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.

Privacy Policy

GDPR

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.

What information do we collect?

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.

How do we use your personal information?

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.

Who can see your personal information?

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.

What other companies receive your personal information?

Your right to be forgotten

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 BallotBin. We cannot remove information from PayPal.

Registry and Survey

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.

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 (using the password you created when signing up for the email list) at www.circadiandisorders.org/list.

Rules

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

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.

Media Kit

Information for journalists etc is on our Media Kit page.
© 2024 Circadian Sleep Disorders Network
Last modified Nov 26, 2023
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