We've updated N24calc, the web app that predicts when you'll be awake if you have Non-24 with a constant day length. The new version uses 12-hour input if that's what your computer's locale is set to, or 24-hour time if it's set to that. It fixes a bug in the previous version in case your "today" started before midnight but it's now after. And adds a notification when it switches to daylight saving time (also depends on your locale). It assumes you're in your awake period when you're using it. Let us know of any problems.
On Monday, Feb. 9, 2020, Project Sleep and the Sleep Research Society co-hosted an Advocacy Day on Capitol Hill bringing together patient advocates and sleep researchers to urge Congress to support critical sleep research and awareness efforts. CSD-N board member Jason Myatt (third from left) participated in support of circadian rhythm sleep disorders research. Dr Phyllis Zee (far left), a member of our Medical Advisory Board, also participated. Thanks to all who helped.
The Board of Directors of Circadian Sleep Disorders Network has elected its officers for 2020 - 2021:
Many thanks to our outgoing secretary, Jen Heller Meservey, for her service.
The Sleep Disorders Research Advisory Board (SDRAB) of the NIH (U.S. National Institutes of Health) met on Jan 6 and 7 to work on their Sleep Disorders Research Plan. Susan Plawsky (not pictured), our circadian rhythm disorders (CRD) patient representative, attended both days. She plays an important role in calling attention to places where CRDs are likely to be overlooked.
Our president, Peter Mansbach, vice president James Fadden, and member Alexandra Escalera also attended and made brief statements Jan 6 on behalf of CRD patients during the public comment period. Here are Peter's remarks:
Hi. I'm Peter Mansbach, and I'm President of Circadian Sleep Disorders Network.
Those of us with Delayed Sleep Phase Disorder or Non-24-Hour Sleep-Wake Disorder suffer. Some of us sleep when our bodies tell us to sleep. We give up good careers to do so, and struggle to earn a living on our odd schedules. And we're still often tired. Others force themselves to be up for the workday, and become sleep deprived, year after year, with all the health issues that eventually result. We desperately need solutions.
Yet this is the current state of research on Circadian Rhythm Sleep Disorders:
This is why we're here. Our current representative, Susan Plawsky's term ends in June. We hope someone else from our circadian-disordered community will be appointed to this Board. Two that I know of have applied.
- Researchers do not even agree on how to define circadian rhythm disorders.
- We do not know how many people have these disorders.
- We do not know what the underlying causes are.
- We do not have a quick way to diagnose these disorders.
- We do not have good treatments; what we do have are largely ineffective.
- What little we do know often isn't implemented by clinicians.
- The public, and even many in the medical community, do not even believe these are real disorders. And they certainly do not understand their severity.
The Society for Research on Biological Rhythms (SRBR) is an international society that promotes the advancement and dissemination of research on all aspects of biological rhythms.
Recently, CSD-N was invited to provide input about circadian rhythm disorders to SRBR's advocacy program. As a result, SRBR.org launched three new website pages: Circadian Rhythm Disorders describing DSPD, ASPD, and Non-24; Awareness & Support with tips on living with a CRD; and Get Involved, which encourages people to share their story, join CSD-N and contribute to our survey.
Thanks to SRBR Public Outreach Committee members Laura Kervezee, Ph.D. and Louise Ince, Ph.D., and CSD-N Board Member Alexandra Wharton for contributing to the content.
Last summer CSD-N prepared recommendations on Needed Research which we submitted for inclusion in a White Paper on needed research for circadian rhythms. The White Paper is being prepared by SRBR together with AASM (American Academy of Sleep Medicine) and SRS (Sleep Research Society). The White Paper is still under development.