It's that time of year again: Thursday, November 24th is N24 Awareness Day, the day the online N24 community has chosen to spread knowledge of our condition. This year's theme is "The Many Faces of N24" and you are encouraged to write, draw, compose, film, or otherwise depict your N24 for a world that has far too little awareness of our existence, let alone what our lives are like.
People living with N24 come from all walks of life: all ages, all skin colors, all genders, all socioeconomic backgrounds, and more. This is a great opportunity to share information about N24 with the world --in the past we have had many people visit our awareness project, including reporters and academics, so know that your voice will be heard and your message will be seen.
To participate in N24 Awareness Day, all you have to do is post something somewhere on or near (we have N24 so we're not really bound by clocks and calendars, right?) November 24th. If you don't have anyplace to post your contribution or if you'd like to have it also published elsewhere, you are very welcome to submit it to the N24 Awareness Day blog at n24day.wordpress.com/.
You can also pick up this year's participation badge at the blog: n24day.wordpress.com/participation-icons/ Feel free to use the participation icon any way you choose. It's great if you want to link it back to the blog, but that's not required. The HTML for linking it is available on the icon page this year. Feel free to copy the icon to your own server or just directly link to it from the blog, using the code provided.
Here's hoping we all have a creative, productive N24 Awareness Day this year.
James Fadden has written up some thoughts on genetics and his own gene analysis in observance of N24 day, at www.circadiansleepdisorders.org/info/N24genes.php.
Susan Plawsky, a former board member of Circadian Sleep Disorders Network (CSD-N), is now officially a full member of the U.S. National Institutes of Health (NIH) Sleep Disorders Research Advisory Board (SDRAB), representing patients with circadian rhythm sleep disorders. Many thanks to her for all the work she is putting in on our behalf, in the development of the next NIH Sleep Disorders Research Plan. She writes:
I'm writing from Washington, DC, after attending the August 18-19 meeting of the NIH Sleep Disorders Research Advisory Board (SDRAB) in Bethesda, Maryland.
At the meeting, the board continued to work on updating the NIH Sleep Disorders Research Plan, which sets forth priorities for NIH-funded sleep research. We heard an eye-opening presentation on light and circadian health by Phyllis Zee, M.D., associate director of Northwestern University's Center for Sleep & Circadian Biology and a member of the CSD-N Medical Advisory Board. The SDRAB also heard reports from various NIH agencies that care about sleep (unfortunately, this took place in the morning, when I was asleep!).
Members of the public were welcome to attend the meeting. Peter Mansbach, CSD-N president, gave a short presentation on the CSD-N patient registry, expected to go live shortly. James Fadden, CSD-N vice president, also said a few words. I appreciate their presence and support.
Thanks to input from members of online circadian rhythm disorder (CRD) communities, I compiled a CRD wish list, which I presented at the meeting. I began my talk by saying that I was grateful and heartened that the SDRAB is keenly interested in researching circadian rhythms—but we need to take research a few steps further. CRD patients are suffering, and they need viable, effective treatments. Then I read my detailed two-page list. The MDs and PhDs on the board seemed very receptive, commenting on several of my points.
That said, I don't know how much of the CRD wish list will make it into the final research plan, and I don't know how much influence the research plan will truly have on the direction of NIH-funded sleep research. But I'll keep bringing CRD patients' needs to the attention of the SDRAB.
Again, my thanks to all who've shared information, insights, and feedback.
We incorporated on Aug 18, 2011. Happy fifth anniversary!
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Circadian Sleep Disorders Network is excited to announce that we are starting a PATIENT REGISTRY, in partnership with PatientCrossroads! By collecting information from as many people as possible we can learn about the commonalities and differences among people with Circadian Rhythm Sleep Disorders, including which treatments work or don't work in the populations actually suffering from these disorders. The data collected will be useful to researchers, and participants who so choose may be contacted by researchers to participate in further research. The registry will be open to participants and researchers world wide. We are in the process of submitting the questions to be used in the survey, and hope to go live soon. Stay tuned for further details.
Thanks to member Elyse for writing up her experience getting accommodations for her DSPS. It took tenacity (and a CSD-N sample letter!), but she jumped through all the hoops and eventually received the accommodation she needed.
Our Non-24 Questions & Answers document is now available in German. Thanks to Christian Sch. for his painstaking work in translating this document.
Circadian Sleep Disorders Network is pleased to introduce an infographic describing Circadian Rhythm Sleep Disorders (CRSDs). Please take a look, at www.circadiansleepdisorders.org/docs/CRSDGraphic.php.
The artwork was created and implemented by former board member and artist Lily Style. The broken clock as central image was her idea, as were the rest of the illustrations. She and other board members cooperated on developing the text, and discussed the colors and elements of design. Lily made changes and posted each iteration, about a dozen of them, for discussion. She most graciously encouraged, and almost always accepted, our input.
Please feel free to repost the graphic to help raise awareness. You can also print it directly from your browser (we suggest making the browser window full screen - the image will resize). We are posting JPG images in various proportions for printing directly on different sizes of paper:
WebMD has posted a nice article on Non-24-Hour Sleep-Wake Disorder at www.webmd.com/sleep-disorders/non-24hour-sleep-wake-disorder. They end with a link to our website: "You can also get more information about Non-24, along with tips for managing the condition, on the web site of the Circadian Sleep Disorders Network. Good to get this recognition! They also reference James Fadden's NORD article.
We created and posted a series of 3-minute videos introducing Circadian Rhythm Sleep Disorders:
James Fadden, our vice president, has written up the arguments supporting our concern that phase-delay chronotherapy (delaying one's sleep time around the clock) may lead to Non-24-Hour Sleep-Wake Disorder. www.circadiansleepdisorders.org/info/N24chrono.php.
Find a Doctor! Circadian Sleep Disorders Network is now hosting the "Find a Doctor" page, a list of doctors that patients with DSPD or Non-24 found knowledgeable and helpful. www.circadiansleepdisorders.org/info/doctors.php.
The information was originally assembled in a wiki by several of our members, from comments sent in by patients. CSD-N was invited to take over maintenance of this page. We believe this can be a useful resource for people looking for a doctor knowledgeable about DSPD and Non-24.
Note that we simply post recommendations we receive from patients. We do not have first-hand knowledge of these doctors, and cannot be held responsible for bad recommendations or errors in posted information.
Let us know if you have additional doctors whom you feel are knowledgeable and helpful regarding CRDs.
NIH has still not included DSPD or Non-24 on their website!
The U.S. National Institutes of Health (NIH) has a number of web pages which talk about sleep disorders. In all these pages we see sleep apnea, narcolepsy, and restless legs; but we do not see any Circadian Rhythm Sleep Disorders - no Delayed Sleep Phase Disorder, no Non-24-Hour Sleep-Wake Disorder. It's no wonder people haven't heard of these disorders, and many doctors still don't recognize how serious they are....
Instructions and sample email are at www.circadiansleepdisorders.org/docs/campaigns/NIHWeb.php . Send email to email@example.com, and please copy CSD-N at firstname.lastname@example.org, so we can follow up, possibly including contacting higher ups.
I received this email from the NIH NHLBI Health Information Center in response to the above campaign. Dr Twery did advise me that it's a slow process, and would take a long time. But that was over two years ago, and they still haven't made the changes. Dr Twery has assured me again (Apr 2016) that it is "in the works". In my opinion, it would still help if more people wrote to him, since we are competing for very limited funds. Together we have a voice! Thank you.
Circadian Sleep Disorders Network will be holding elections for its Board of Directors, and is seeking some new faces. Requirements are described in http://www.circadiansleepdisorders.org/docs/ReqDir.php. Meetings are held by online forum, so you can log in at any time of day to participate. Meetings do continue for a month or more.
If you're interested, please let us know soon, by email sent to , and write a short (preferably less than 300 words) paragraph about why you would like to serve, and any skills or experience that might be useful to us (for example writing, public relations, fundraising, law, accounting, healthcare, or other non-profit experience). To introduce the candidates to the voting members, this text will be used in the newsletter sent out prior to the election, and on the election ballot. The election will be held online during the first two weeks in December, with CSD-N members voting from the list of candidates. Directors start serving January 15, 2016.
We are also looking for a new secretary, a new treasurer, a new newsletter editor, and other volunteers willing to help. These officers can be board members but do not have to be. The main duty of the secretary is to write up minutes of the meetings, which are held by online forum. The main treasurer duties are keeping the books up to date as new members join and old ones renew. The newsletter editor can take content from the web site home page, or write new content, and format it in MailChimp. If you're interested, please let us know soon, by email sent to .
Many thanks to Susan Plawsky (a former CSD-N Board member) for representing the CRD community on the (U.S.) NIH Sleep Disorders Research Advisory Board (SDRAB). The SDRAB meets several times a year to set policy for sleep research funded by the US government. The board includes patient representatives. For the first time this year we have a patient representing circadian disorders, Susan, who has DSPD. The SDRAB is revising the NIH Sleep Disorders Research Plan, and Susan is providing valuable input from our perspective. She attended the SDRAB meeting on April 14-15 in Bethesda, MD, and wrote a recap of the meeting with some of her impressions. Also, Peter Mansbach (CSD-N president) spoke during the public comments period to announce CSD-N's plans for a patient registry, among other topics. His presentation is here.
Circadian Sleep Disorders Network joins with NORD and EURORDIS in celebrating Rare Disease Day on Feb 29 to raise awareness of rare diseases.
Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
The 2016 global theme, "Patient Voice," recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.
The National Organization for Rare Disorders (NORD) is the official Sponsor of Rare Disease Day in the United States. EURORDIS (The European Organization for Rare Disorders), organizes the official international campaign. Over 80 countries participated in Rare Disease Day 2015. To learn what's happening around the world, visit the global Rare Disease Day website at rarediseaseday.org.
Non-24-Hour Sleep-Wake Disorder is recognized as a rare disease. Advanced Sleep Phase Disorder is likely rare as well, though we don't have good incidence data. Delayed Sleep Phase Disorder is considered too common to be officially rare. But since so few people have been diagnosed, we face the same issues in raising awareness as if it were rare.
The calendar of regular CSD-N Board events has been migrated to a Google Calendar. Members can view the calendar here. You can also add it to your own Google calendar by clicking on the blue "+" sign at the bottom of the page.
The Board of Directors of Circadian Sleep Disorders Network has elected its officers:
Elections for the Board of Directors concluded in December. The board welcomes newly elected board member Lily Style. Re-elected were Asli Kumcu, Beth Macdonald, and Peter Mansbach. Thanks to all who ran and all who voted.