Circadian Sleep Disorders Network will be holding elections for its Board of Directors, and is seeking some new faces. Please read the requirements. Meetings are held by online forum, so you can log in at any time of day to read what's been posted and post your replies. Meetings do continue for a month or more, though often not very actively.
If you're interested, please let us know soon (latest Nov 10), following the instructions at the end of the above document. Directors start serving January 15, 2020. Terms generally run for two years. There are five open slots, and only three incumbents are planning to run again, so we encourage interested people to run.
We are also looking for a new secretary 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. If you're interested, please let us know soon, following the instructions at the end of the above document.
On June 8-12 the 2019 SLEEP Conference, the annual meeting of the American Academy of Sleep Medicine (AASM) and the Sleep Research Society (SRS), was held in San Antonio, TX.
The conference presented and discussed the latest developments in clinical sleep medicine, and sleep and circadian research. Alexandra Wharton, a board member for Circadian Sleep Disorders Network, attended the Tuesday sessions on an 'Advocate' pass.
During the four-day event, there were more than 100 sessions, with 24 focusing on circadian rhythms. This is quite an increase from just a few years ago.
UCSF (University of California San Francisco) researcher Dr. Louis Ptacek, a pioneer in establishing genetic studies for sleep behavior, discussed his research on humans, fruit flies, and mice, probing the biology regulating the body clock and sleep.
Dr. Phyllis Zee of Northwestern University spoke about the impact circadian rhythms have on weight gain for children and adults. A new study finds that light exposure overnight during sleep has been shown to influence metabolism and highlighted the importance that properly timed light be considered as part of a healthy lifestyle. Dr. Zee also discussed important advances that were made this year in terms of blood testing to identify gene expression to determine circadian timing.
California State Senator Anthony Portantino received an AASM award for his work developing public policy that moves school start times later so students get adequate sleep. His bill, SB-328, Pupil attendance: school start time, would require the school day for middle schools and high schools in California to begin no earlier than 8:30 a.m.
Other hot topics included how essential proper sleep is to mental health, if cannabis is effective for improving sleep, and the need for standards for measuring sleep cycles with wearables.
Last week, the U.S. House Appropriations Committee on Labor, Health and Human Services, and Education (LHHS) advanced a key bill that would provide important funding for sleep research and education projects in Fiscal Year (FY) 2020. The bill includes a total of $41.1 billion in funding for the National Institutes of Health (NIH), an increase of $2 billion over FY 2019. Of specific interest to our community, the Committee published a recommendation on Sleep Disorders stating:
The Committee commends the recent expansion and advancement of the sleep and circadian research portfolio under the coordination of the National Center on Sleep Disorders Research (NCSDR). The Committee encourages dedicated research activities on specific sleep disorders, such as narcolepsy and restless legs syndrome, to ensure scientific progress benefits patients impacted by debilitating conditions disordering their sleep and biological rhythms.Language like this has been a driving force behind the recent funding expansion of the sleep and circadian research portfolio at NIH. With additional congressional focus on individual sleep disorders, we should expect to see meaningful investment in specific sleep conditions moving forward.
The bill also includes a total of $8.3 billion for the Center for Disease Control and Prevention (CDC), an increase of $921 million over FY 2019. Importantly, the legislation set aside $3 million for Chronic Disease Education and Awareness, as a new program that would award grants to address chronic diseases and their risk factors. This new program could help to fund critical sleep education and awareness, but more on this effort coming soon!
We note that this is just the start of a long legislative journey. The bill must pass the full house, then pass the Senate, and be signed by the President.
CSD-N board member Alexandra Wharton called our attention to a bill (HB 1602) pending in the Texas legislature that would require schools in Texas to start no earlier than 8:00 a.m. She herself testified at the Texas House Public Education Committee hearing on April 4, 2019 at the state capitol in Austin, and she suggested CSD-N write a letter of support. You can view her testimony here (using her married name Alexandra Spencer), and read our letter here. Unfortunately the bill died in committee. However, there is continuing interest on the part of some of the legislators, and it is expected to be revived in the next session with better chances.
Interesting article in the Washington Post: How living on the wrong side of a time zone can be hazardous to your health.
Last October we reported that Elizabeth McDougall, eighth grader and recipient of the Edward R. Foley Citizenship Prize at Derby Academy in Hingham, Massachusetts, was doing her community project on Circadian Rhythm Sleep Disorders. She sent this progress report:
I just wanted to let you know that, a few weeks ago, I asked students in our upper school to create posters about Circadian Rhythm Sleep Disorders based on information they learned from my presentation or anything they learned from their own research. We hung them in our Brown Art Gallery so that the rest of the school and visitors could see them. I attached a picture of some of them. [Webmaster's note: we do not have permission from the makers of the posters, or their parents, so we have not posted the photo.] The students who created a poster could ignore dress code for a day. They could even wear their pajamas to school, if they wanted to.Thank you again, Ms McDougall!
Also, Will Slotnick, founder of Wellness Collaborative, comes to our school for a couple of weeks each year to provide drug education, stress management, and mindfulness training to students, parents, faculty, and administrators. He is joined, for one of the days, by the local D.A.R.E. officer. This year, my mother and I brought them up-to-date on my brother's diagnosis and how circadian rhythm sleep disorders can appear to be depression, anxiety, or defiance. From now on, they will keep this in mind when when they work with other students.
Tonight is our school's annual talent show. I will be selling refreshments at intermission at a table displaying your poster and pamphlets. We are expecting approximately 250 people so hopefully I will help spread awareness to family and friends of our school community.
I notice on your website that you are working to include Circadian Rhythm Disorders on the National Institutes of Health website. That would bring much more visibility, and hopefully eventually more funding, to these devastating disorders.
Our president, Peter Mansbach, was invited to attend the 2019 World Orphan Drug Congress USA at National Harbor, MD. This is sponsored by companies working on solutions for rare diseases, and rare disease organizations including NORD and EURORDIS. There is increasing emphasis on including patient perspectives in all stages of pharmaceutical research, including setting treatment goals ("endpoints") and finding patients for trials. Peter participated in a round table discussion on endpoints, and attended several talks.
Vanda Pharmaceuticals is planning Phase II trials this year for Hetlioz® as a treatment for DSPD (Delayed Sleep Phase Disorder). Hetlioz is already approved (in the U.S.) for treatment of Non-24-Hour Sleep-Wake Disorder, in both blind and sighted individuals. Hetlioz is the brand name of tasimelteon, which is a melatonin agonist (i.e. it works similarly to melatonin).
CSD-N, along with other sleep organizations, has signed on to a letter requesting the U.S. Congress to restore funding to the CDC (Center for Disease Control and Prevention [U.S.]) dedicated to sleep research and awareness. You can read the letter here. Thanks to Julie Flygare at Project Sleep for pulling together all these sleep organizations.
New CSD-N board member Alexandra Wharton has been appointed as CSD-N's Social Media Liaison. She will take charge of our Twitter feed and LinkedIn page, and may contribute to our Facebook page and other social media outlets as she sees fit. Thanks to Jennifer Silvia, our previous social media liaison, who handled these duties in the past.
For SIX YEARS we have been trying to get Circadian Rhythm Sleep Disorders (CRSDs) listed and documented on the NIH website. That campaign came to a head at the SDRAB (U.S. NIH Sleep Disorders Research Advisory Board) meeting on Friday, Jan 18. We had a half hour segment on the agenda at 1:30 pm to present our case and to hear from the OSPEEC (Office of Science Policy Engagement, Education, and Communications - the office which controls the website) which has in the past been unresponsive. Peter Mansbach (in photo) presented brief arguments and history, which is posted at https://www.circadiansleepdisorders.org/docs/NIH-SDRAB-website.php. That document includes a proposed resolution that was to be presented to the SDRAB, and which included our proposal for minimum web content.
Our arguments were well received, both by the SDRAB and the OSPEEC. The director of OSPEEC assured us that they are in full agreement. Their content person said they are working to make the website more accessible and discoverable, with new central pages to assist navigation. Peter expressed concern that our additions were being deferred for other design goals, when our proposed content can fit seamlessly into the present design and still be used as topics get rearranged. The director assured us that the "process [for including CRSDs] has begun", and our new elements can be develped concurrently. However, it sounded like it would take at least 6 months to get anything posted, and probably longer. It's a large bureaucracy.
Susan Plawsky, our CSD-N representative on the SDRAB, spoke in support. Linda Secretan, the patient representative for Restless Legs Syndrome (RLS), gave a strong statement of how helpful it has been to the RLS community to have RLS on the NIH website - it's validation of a disorder that many people otherwise just find amusing. Dr Sairam Parthasarathy and others spoke in support. It was felt unnecessary to formally vote on our proposed resolution, since we had so much support from the SDRAB.
The bulk of the meeting, of course, was devoted to the details of developing the next Sleep Disorders Research Plan, optimistically scheduled to come out this June. Many thanks to Susan Plawsky for continuing to represent CSD-N and the Circadian Rhythm Sleep Disorders community in this endeavor. The photo is of Dr. Michael Twery, director of NCSDR (National Center for Sleep Disorders Research) addressing the SDRAB. In the foreground are Dr Aaron Leposky, NCSDR staff, and Dr Gabriel Haddad, current chair of the SDRAB.