The Circadian The Newsletter of the Circadian Sleep Disorders Network

Vol 2 No 2 - August, 2013

csd-n-news@csd-n.org The Newsletter of the Circadian Sleep Disorders NetworkVol 2 No 2 - August, 2013

Contents

NSF Responded to Our Campaign!

We've spent the past several months continuing our work to raise awareness, and planning for future awareness activities. Some highlights are below.

A few months ago the National Sleep Foundation (NSF) created a new set of web pages on non-24 with some serious and harmful misinformation on Non-24 in sighted people. We responded with an email campaign asking them to fix the misinformation, and to add DSPD to their website. Thanks to our members' emails to them, NSF has changed the most objectionable statement to our satisfaction and added a link to our website. However, they have not yet made the other modifications we asked for. And they still have not listed DSPD at all.

So we urged our members to write them again. And they did. The NSF has now said that they plan to add DSPD. No timetable yet, we expect it will take some time.

Thanks to everyone who emailed the National Sleep Foundation (NSF). The emails from our members and others were instrumental in bringing about these changes. Together we have a voice!

CSD-N in the Media

Salary.com

Websites Linking to CSD-N

Non-24 Added to NORD Database

A fourth article in a series on DSPS was recently published on salary.com, featuring an interview with CSD-N member Julie Peggar on how she has managed her impressive career as an ethnographer. This article is titled Why Working 9 to 5 Might Be Bad for Your Health . The third article in the series was Should Some Employees Be Allowed to Start Work Late? , about member Tom Lemmon on how he has managed his career as a software engineer. The second was Change Your Career, Not Your Sleep Habits , about member Maya Kochav, a freelance writer. In the first article, How Your Bedtime Is Affecting Your Job Performance , our president, Peter Mansbach, was interviewed. All the articles in this series are by reporter Nancy Ancowitz. Thanks to board member Susan Plawsky for suggesting this topic to the reporter and arranging the interviews.We have asked other sleep- and health-related web sites to add a link to the CSD-N website, so interested people could learn more about circadian sleep disorders. That also helps our search ranking, making it easier for others to find us. Sites which have linked to us include:In addition, circadiandisorders.org , which was no longer being maintained, now forwards their traffic to us.email other websites with a request to link to Circadian Sleep Disorders Network at www.circadiansleepdisorders.org . Please use this primary address when suggesting links, not the shortcut.

At our urging, NORD, the National Organization of Rare Diseases (www.rarediseases.org) has added Non-24-Hour Sleep-Wake Disorder to their list of rare diseases. Special thanks to James Fadden, our vice president, who wrote up an excellent description of the disorder, supported by references to the research literature; and to Dr Katherine Sharkey, on our medical advisory board, who edited it and supported our application. The writeup can be viewed at www.rarediseases.org/rare-disease-information/rare-diseases/byID/1275/viewAbstract. You need to sign up at NORD [free] to see the full text.

National Sleep Walk

CSD-N Active at Meetings

Presentation at NSART

Circadian Sleep Disorders Network was an affiliate sponsor of the third annual U.S. National Sleep Walk , to "celebrate sleep health & sleep disorder awareness in our nation's capital". We got a nice paragraph on their affiliates page , our name on the back of their T-shirts, and a mention in their press release.The walk was held March 3 at the Lincoln Memorial in Washington, DC. It was scheduled an hour later than previous years, in part due to our lobbying. We even won afor our CSD-N sign!

Circadian Sleep Disorders Network was accepted as the newest member of NSART, the National Sleep Awareness RoundTable. This is part of NSF, the (U.S.) National Sleep Foundation, operating under a grant from CDC, the (U.S. government) Centers for Disease Control.

Our president, Peter Mansbach, presented some information about CSD-N at the meeting on Feb 28. The text of the talk, together with a brief introduction to NSART, can be viewed here.

Presentation at NIH

Talk at Narcolepsy Network Conference

Peter Mansbach also presented some thoughts at the NIH (U.S. National Institutes of Health) Sleep Disorders Research Advisory Board meeting on Feb 25. These included a renewed push to get circadian sleep disorders listed on the NIH web site, and two major concerns about research into these disorders. The text of the talk, together with a brief summary of other topics discussed, appears here . A video re-enactment of the second half of the presentation, describing two of our concerns with current research, is here Peter Mansbach (CSD-N president) will be giving a talk on Circadian Rhythm Sleep Disorders and Narcolepsy at the Narcolepsy Network Conference in October. The description in the conference program reads:

"Many people with narcolepsy go to bed late and have real trouble getting up on time in the morning. Delayed sleep seems to be common with them. In this session we explore Delayed Sleep Phase Disorder and Non-24-Hour Sleep-Wake Disorder. We discuss diagnosis and the potential for DSPD to be misdiagnosed as narcolepsy. We'll note that those of us with circadian disorders face many of the same prejudices that confront people with narcolepsy."

Renew Your Membership!

Help Us Spread Awareness

We appreciate your membership, which runs for the calendar year. Some of you haven't renewed yet for 2013. Please renew now, at whatever level you can afford. We achieve credibility through numbers, so it is important that you renew. People will listen to us, and we can be more successful in spreading awareness, when we have more members.at www.circadiansleepdisorders.org/join.php Your dues help cover printing and postage costs for our awareness campaign, including mailing our brochures and web site information to sleep labs and doctors to spread awareness of our disorders, and to members for distribution to their doctors (see below). We will keep you informed of our progress. Dues also pay for web hosting and government fees (incorporation, nonprofit tax exemption).In addition to giving us credibility, your membership provides you certain benefits not available to non-members. These are listed on the Join page, and can be accessed from our Members page.

We are asking our members and followers to give our brochure, and/or our Q&A booklets, to their sleep doctor and their general doctor 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 effective our voice becomes on behalf of all people with circadian sleep disorders.

You can print out the brochure on US letter paper (8½x11) or on A4 paper (non-US). Booklets can be printed for DSPS or for Non-24 (the same file can be printed on either US or A4 paper). Alternatively you can email us at csd-n@csd-n.org to request a printed copy of any or all of these documents (please specify which). Be sure to include your name and full postal address. We will send these at no charge to you.

CSD Fact Sheet, Brochure, Q&A Booklets



Fact Sheet Explains CSDs at a Glance

Brochure

Q&A Booklets

Get Your CSD-N Merchandise

We are offering merchandise (mugs, T-shirts, tote bags, bumper stickers, and a messenger bag) with our name and logo through CafePress, at 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

Niteowl List





CSD-N board members read the Niteowl list, and list-members are welcome to discuss suggestions/opinions about CSD-N there. You can also email us at Circadian Sleep Disorders Network has formally affiliated with the Niteowl Email List . CSD-N grew out of this list - the founders of CSD-N met on this list, many of our members participate, and we share the same goals. We are also available to assist the list administrator. Nothing about the list's operation will change. We do not have the ability to moderate this list.CSD-N board members read the Niteowl list, and list-members are welcome to discuss suggestions/opinions about CSD-N there. You can also email us at csd-n-news@csd-n.org

Our Web Site





Newsletters are archived on the



If you notice any broken links (links that don't work), please report them to us We have a wealth of information on our web site, www.circadiansleepdisorders.org . Each of our pages has tabs at the top and bottom that link to the other main pages. Many pages also have links in the blue bar at the left, to get to topics within that page or to related pages.Newsletters are archived on the Members page, in case you want to see this newsletter again, or previous issues.If you notice any broken links (links that don't work), please report them to us

You can also email us with comments and suggestions about the newsletter (or anything else).

Our one page Fact Sheet summarizes the essentials of Delayed Sleep Phase Syndrome and Non-24-Hour Sleep-Wake Disorder. It is directed at the general public, people who may never have heard of these disorders. So we kept it simple, direct, and short.Our brochure is available for viewing or printing . An A4 version can be downloaded for printing on A4 paper.The more detailedfor both DSPS and Non-24 are also posted on the web site.