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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.
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.
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.
Note that all our directors and officers are volunteers. We are not paid for our work.
Peter Mansbach, President and Founder Bethesda, MD |
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term expires 1/2014 |
James Fadden, Vice President Founding board member Potomac, MD |
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1/2014 |
Beth Macdonald, Secretary Founding board member Arnatveit, Norway |
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1/2014 |
Laura Curtis, Treasurer Hermitage, TN |
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1/2015 |
Darren Hill Spennymoor, UK |
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1/2014 |
Susan Plawsky Massachusetts |
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1/2015 |
Ann Snider Timnath, CO |
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1/2015 |
Participating on our Medical Advisory Board are:
Thanks to all the other people who have volunteered to provide help and advice on the many decisions facing our organization.
In addition to the Board members above, they include:
Articles of Incorporation
EIN: 45-3041974 (U.S. Employer Identification Number)
Bylaws
IRS 501(c)(3) determination letter
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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 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. 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.
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.