CSD-N logo Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Mission
Email List
Organization
Board of Directors
Medical Advisory Board
Organizational Docs
History
Privacy Policy

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Our Mission

Circadian Sleep Disorders Network is a 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 encourage research into circadian rhythms, and to advocate for accommodations in education and employment for people with circadian rhythm sleep disorders.

Niteowl Email List

This is a 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. Circadian Sleep Disorders Network was formed by participants on this list, and many of our members participate.

Once you've signed up for the list, you post by sending an email to niteowl@circadiandisorders.org. 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.

Once you've signed up for the list, you can also browse previous posts at
lists.circadiandisorders.org/private.cgi/niteowl-circadiandisorders.org/.

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

Note that all our directors and officers are volunteers. We are not paid for our work.

Peter Mansbach, PhD, President,  
Founder and Webmaster
Bethesda, MD

 
Peter Mansbach term expires
1/2016
James Fadden, Vice President  
Founding member
Potomac, MD
  
 
James Fadden 1/2014
Beth Macdonald, Secretary
Founding member
Arnatveit, Norway

 
Beth Macdonald 1/2016
Andrew Wall, Treasurer
Reidsville, NC
Andrew Wall 1/2015
Laura Curtis
Hermitage, TN
Laura Curtis 1/2015
Darren Hill
Spennymoor, UK
Darren Hill 1/2016
Asli Kumcu
Belgium
Asli Kumcu 1/2016

Requirements for Directors and Officers

Other web sites maintained by members of our board

An ongoing blog about DSPS and N24: delayed2sleep
A web page describing DSPS, with additional links
A wiki on circadian rhythm disorders

Medical Advisory Board

Participating on our Medical Advisory Board are:

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 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
Assistant Professor of Medicine, Harvard Medical School
Physician, Pulmonary, Critical Care & Sleep, Beth Israel Deaconess Medical Center

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

Organizational Documents

Articles of Incorporation
EIN: 45-3041974  (U.S. Employer Identification Number)
Bylaws
IRS 501(c)(3) determination letter

Our IRS Form 1023 Application for Tax Exempt Status is accessible to members on the Members page, or by request to .

Requirements for Directors and Officers

Some History

Around 1996 Wendi Dunlap started an email list at circadiandisorders.org for people with CSDs. The list has grown to over 600 members, primarily people with DSPS or N24 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 very much want to be representative of the CSD community, and we took care to involve the niteowl list in the initial discussions, including choice of the name for the organization. We also asked for volunteers to be consulted on subsequent decisions. Anyone who volunteered was added to an Advisory Panel, which was consulted on important issues during the startup phase. As a result, of course, progress was slower than if we had simply made decisions in isolation.

We've now incorporated, 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, and filed tax returns. We have formed a Medical Advisory Board, expanded the web site, and formally affiliated with the Niteowl Email List. We are developing programs and strategy, and embarking on the goals in our mission. There's still a lot to do! Current activities are in the News section of our Home Page.

Privacy Policy

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. It's part of 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, treasurer, and secretary, since they need to process your membership dues, email the election ballots, etc. The election ballots are processed by a third party (BallotBin.com), so they do get your email address, but they promise not to use it other than for the conduct of the election. We use MailChimp to send the newsletters, so we don't trigger spam blockers, so they too receive the list of email addresses.

We are not requiring members to provide any more personal information than they are comfortable providing. However, if you do not give us a valid email address, we will not be able to contact you at all, so we do ask for that.

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.

We will retain your membership information for three years after your membership lapses, to allow us to send renewal reminders and perhaps some especially important news. After that, all information about you will be deleted.

© 2014 Circadian Sleep Disorders Network
Last modified Apr 13, 2014
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