November 2025
Nominations for the CSD-N Board of Directors have closed. One new candidate, Stephen Mathewson, has volunteered to run. Two current Board members, Sarah Hazelwood and Peter Mansbach, are running for re-election.
Since there are three candidates for three slots on the Board, it is not necessary to conduct formal balloting by the membership.
New Board members begin to serve at the start of the next meeting, on Jan 15, 2026.
October 2025
CSD-N Board members Sarah Hazelwood and Andrew Cowen recently met with representatives of the Society of Behavioral Sleep Medicine (SBSM). The working group was composed of medical providers, researchers, and a number of individuals living with Circadian Rhythm Disorders. Those with CRDs shared thoughts on their experiences living with these conditions as well as navigating medical care. The group discussed how to prioritize outcomes for sleep interventions. The volunteers weighed in with the medical providers about their priorities and concerns with their sleep disorders, and what each might consider as ideal outcomes when working with medical professionals.
October 2025
Naomi Mittet, former CSD-N secretary and board member, was interviewed for an article in SeattleMet, What It's Like to Truly Be Sleepless in Seattle - Life with a circadian rhythm sleep disorder, by Haley Shapley.
Naomi describes her child's struggles with school, and her own gradual realization that Non-24 was behind those struggles. Another interviewee, Tyler Zuck, describes his experience with DSPD.
October 2025
Circadian Sleep Disorders Network will be holding elections for its Board of Directors. Requirements are described here.
Meetings are held by online forum, so you can log in at any time of day (typically once a day) to read what's been posted and post your replies. Meetings do continue for two months or more, though often not very actively.
If you're interested, please let us know soon (latest Nov 15), following the instructions at the end of the above document. Directors start serving January 15, 2026. Terms generally run for two years.
Currently running for re-election to the board are Peter Mansbach, Sarah Hazelwood, and (provisionally) Samuel Bearg.
We are also often looking for other volunteers willing to help. These can be board members but do not have to be. If you're interested in volunteering, please let us know, including any skills you have. In particular, we need a secretary, who may be, but does not need to be, a board member.
Oct 13, 2025
CSD-N president Peter Mansbach was interviewed by Abigail Myers, a Ph.D. student at the University of Vermont. Ms Myers is a participant in the National Science Foundation's I-Corps (Innovation Corps) program.
She was interested in the problems circadian rhythm sleep disorders patients face, our needs for research, and how that research might translate into practice. She was particularly interested in melatonin. Peter reviewed some of his own experiences, and referred her to our Needed Research document and our survey results publication.
August 2025
On August 7 and 8, 2025, the NIH (U.S. National Institutes of Health) Sleep Disorders Research Advisory Board (SDRAB) in-person meeting was held in Bethesda. CSD-N Executive Vice President Alex Wharton, our SDRAB representative, attended. CSD-N President Peter Mansbach also attended on the first day.
SDRAB members (sleep physicians, researchers and patient advocates) and attendees shared their perspectives on a range of sleep health matters. Speakers included Dr. Anita Shelgikar, president of the American Academy of Sleep Medicine, Dr. Klar Yaggi, director of Yale Center for Sleep Medicine and Dr. John Hogenesch, president of the Society for Research on Biological Rhythms.
The purpose of the meeting was to make recommendations for refreshing the goals of the NIH Sleep Research Plan, which was last published in 2021. One of the sections of the Research Plan focuses on elucidating sleep and circadian mechanisms that underlie health and disease.
On August 7, Alex spoke about the need for a faster time-to-diagnosis for DSPD. She recommended a detailed patient history that includes family members, testing for biomarkers like melatonin and cortisol and DNA testing for variants of clock genes.
She stressed that there is no silver bullet for treating DSPD. Treatments that are proven to be effective for shifting sleep earlier for some late chronotypes / night owls such as light therapy, phase-delay chronotherapy, SSRIs, CBT or stricter schedules are not effective for DSPD. She hopes that as awareness builds, accommodations for later start times at work and school (and starting all schools later) will become more accepted.
One of the talks called for increased awareness of the impact of sleep health on one's risk of diabetes. Peter noted that his doctor knew about that connection - she told him that "going to bed at 3:30 a.m. is going to increase your risk of diabetes" - but did not understand that individual circadian phase needs to be taken into account. We still need to raise awareness of circadian rhythm disorders and their impacts.
On August 8, Alex spoke about the danger of anticholinergic medications (diphenhydramine, some antidepressants such as Trazodone and hypnotics such as Ambien) that many DSPD patients use regularly. There was a recent study linking the long-term use of anticholinergic medications to an increased risk of dementia. The comments were relevant to two SDRAB members' work - Dr. Alberto Ramos and Dr. Paula Desplats - who are studying dementia and neurodegeneration in older adults.
Alex thanked the NCSDR staff for including Dr. Michael Sesma's presentation at the December meeting. He highlighted labs across the country that are researching aspects of the molecular clock.
August 2025
CSD-N had an inquiry from ARPA-H (Advanced Research Projects Agency for Health, part of the U.S. Dept of Health and Human Services). CSD-N president Peter Mansbach spoke with their representative. They recognize that circadian rhythms affect many biological processes, and disorders of the circadian rhythm may affect health in many ways, and they are interested in those connections. We discussed, among other things, the need for simpler tests for circadian phase; and our survey observation that depression often followed circadian misalignment rather than causing it.
June 2025
From June 8 to June 11, 2025, the APSS annual SLEEP conference was held in Seattle, Washington. CSD-N Executive Vice President Alex Wharton and Board Member Pillar Quinn attended the event and hosted CSD-N's booth, located in the Advocacy Pavilion of the exhibit hall.
Alex and Pillar answered questions and shared information about DSWPD and Non-24 patient experiences with the booth's steady stream of visitors (physicians, scientists, students and patients). The visitors offered ideas for improving CRD diagnosis such as biomarker testing, including melatonin and cortisol, and screening scales that inquire about chronotype, including the Pittsburgh Sleep Quality Index and Munich Chronotype Questionnaire. Alex highlighted circadian clock research studies in labs across the country and collaborated with fellow sleep disorder patient advocates about sharing resources and efforts.
Alex and Pillar also participated in a range of events and gatherings. Alex was CSD-N's representative at the AASM Patient Advocacy Roundtable in-person meeting, led by 2024 AASM President Dr. Eric Olson, and attended by several patient advocacy organizations including Project Sleep, Narcolepsy Network and Alliance of Sleep Apnea Partners.
Educational sessions they attended included: Circadian Rhythms and Their Impact on Health: From Genetic Variations to Metabolic Responses, co-chaired by Dr. Christopher Depner and Dr. Dayna Johnson, and Circadian Medicine: Centering Interventions Around Sleep or the Clock?, chaired by Dr. Saurabh Suhas Thosar.
Dec 2024
The NIH Sleep Disorders Research Advisory Board (SDRAB) meeting was held on December 4, 2024 with CSD-N Vice President Alex Wharton (photo at left), our SDRAB representative, in attendance. The one-day meeting was replete with updates and discussions about circadian rhythm research.
SDRAB Chair and Director of the University of Chicago Sleep Center, Dr. Esra Tasali, explained that sleep medicine and circadian medicine are intersecting - and that trainees should be educated on both of these interrelated biologies. She also stressed the importance of scientists reporting on circadian markers when conducting sleep research.
Dr. John Hogenesch, geneticist, professor of pediatrics at the Cincinnati Children's Hospital and president of The Society for Research on Biological Rhythms, described SRBR's interests and activities. The international society advocates for policies that take biological rhythms into account to improve human health including permanent standard time, later school start times and chronotherapy (timing of medications). He explained that up to 25% of all medications could be improved by timing and that medication should be administered based on a person's internal circadian rhythms to maximize effectiveness.
Alex asked Dr. Hogenesch how CRD sufferers could access genetic testing specifically for the human circadian clock gene CRY1, which is associated with a familial form of DSPD in 1 in 75 individuals with non-Finnish European ancestry. A mutation in CRY1 alters the human circadian clock, and carriers of the gene variant experience an intractable delay of sleep onset compared to non-carriers. Genetic testing could improve diagnosis for people living with CRDs as we struggle to "prove" the conditions are physiological and not psychological.
For the Sleep Research Coordinating Committee presentation, Dr. Michael Sesma, an NIH health science administrator, presented a portfolio of work of several labs across the country that are studying various aspects of circadian rhythms. Here are some of highlights from Dr. Sesma's talk.
Mar 2025
Project Sleep's Rising Voices leadership program trains people with sleep disorders to become effective advocates through authentic storytelling and public speaking. Graduates are equipped to share their stories with healthcare providers, universities, local communities, news outlets, blogs, and more, to help raise awareness and reduce stigma.
The 2025 Rising Voices training will take place *online* from June 15-July 20. Spots are limited—the application deadline is April 15th, 2025, at 12 midnight ET.
For details and application click here.
Jan 2025
The American Academy of Sleep Medicine has released a new position statement emphasizing the clinical significance of sleepiness and its impact on performance, health, mood, safety, and quality of life.
The position states that sleepiness is a critical patient-reported outcome that is associated with an increased risk for adverse health effects and diminished quality of life. The statement urges health care professionals, policymakers, and researchers to prioritize the evaluation, management, and treatment of sleepiness to improve public health.
Circadian Sleep Disorders Network is listed as an organization supporting their position statement.
Full article is here.
Full peer-reviewed paper is:
Heffron TM, Gurubhagavatula I, Trotti LM, et al, Clinical significance of sleepiness: an American Academy of Sleep Medicine position statement, Journal of Clinical Sleep Medicine, AASM, 2025
 Pillar Quinn |
 Antonis Papathanasiou |
Dec 2024
We had five incumbents and two new people running for seven open slots on the Board, so a formal election by the membership was not required. We welcome new board members Pillar Quinn and Antonis Papathanasiou. Pillar lives in Everett, WA (U.S.), and Antonis lives in Greece. Photos above.
Five incumbent board members were up for re-election, and will serve another two years. They are Andrew Cowen, James Fadden, Leslie Head, Lynn McGovern, and Alexandra Wharton. Three more have terms expiring next year: Samuel Bearg, Sarah Hazelwood, and Peter Mansbach. Photos and locations are at circadiansleepdisorders.org/aboutus.php#BofD
Maggie Leppert chose not to run again, and resigned from being secretary. We wish her well.
Oct 2024
On October 28 and 29, 2024, Circadian Sleep Disorders Network Vice President Alexandra Wharton attended the fifth annual Sleep Advocacy Forum and Hill Day in Washington, DC.
This year's Forum - facilitated by Project Sleep - brought together patients, policymakers and sleep community leaders to address critical issues in sleep health. Speakers included Dr. Marishka Brown, director of the NIH National Center on Sleep Disorders Research, who discussed emerging opportunities in circadian research. Josh Andrews, a retired NFL offensive lineman, spoke about his experience playing professional football while living with narcolepsy.
On Hill Day, attendees from 42 patient advocacy organizations and professional societies divided into seven teams. These teams conducted more than 50 meetings with legislative staff about the need to elevate awareness of sleep disorders - especially among school nurses, teachers and students. Alexandra was part of a team (photo above) that visited several Texas congressional offices including U.S. Representative Lloyd Doggett. She is second from the left.
Oct 2024
Circadian Sleep Disorders Network will be holding elections for its Board of Directors. Requirements are described here.
Meetings are held by online forum, so you can log in at any time of day (typically once a day) to read what's been posted and post your replies. Meetings do continue for two months 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, 2025. Terms generally run for two years.
We are also often looking for other volunteers willing to help. These can be board members but do not have to be. If you're interested in volunteering, please let us know, including any skills you have.
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Sept 2024
The Board of Directors is pleased to announce the election of Alexandra Wharton as Executive Vice President, and Maggie Leppert as Secretary, to fill these vacancies. Their terms run to Jan 2026. Congratulations!
June 1-5, 2024
From June 1 through 5, SLEEP 2024 was held in Houston, Texas. It's the annual conference of the Associated Professional Sleep Societies (APSS) - a joint venture of the American Academy of Sleep Medicine (AASM) and the Sleep Research Society (SRS).
Five thousand sleep professionals and patients attended the conference, which is dedicated to clinical sleep medicine and sleep and circadian research.
Circadian Sleep Disorders Network exhibited in SLEEP's Advocacy Pavilion with the booth (photo above) staffed by board members Leslie Head and Alexandra Wharton (photo below). They were encouraged by the level of interest in circadian rhythm sleep disorders and in our organization.
Dozens of sleep professionals and graduate students visited the booth and took copies of our patient survey results paper, Registry and Survey of Circadian Rhythm Sleep-Wake Disorder Patients, and our brochure. Several attendees suggested physicians and researchers with whom CSD-N should collaborate.
The panel entitled Legal Issues in Sleep Medicine focused primarily on the issue of drowsy driving. Though criminal prosecutions for driving drowsy are rare, some states can still interfere with a sleep patient's ability to obtain and maintain a driver's license. As an example, individuals in Virginia with "narcolepsy and sleep disorders" may be required to provide a letter from their doctor that their condition is well controlled before being issued a driver's license. The definition of "sleep disorders" in Virginia has been expanded to include sleep apnea, where individuals may be required to demonstrate that they use their CPAP machines regularly. It is unclear whether circadian rhythm disorders would be included as a "sleep disorder" under the Virginia statute.
During the plenary session on June 3, Julie Flygare, president and CEO of Project Sleep, accepted the Sleep Research Society's Public Service Award. In Julie's speech, she discussed the importance of including patient voices and perspectives in scientific and clinical research to advance progress.
There were more than 100 sessions; several were focused on circadian rhythms including Circadian Rhythms - From Genes to Populations, Leveraging Sleep Medications, EHR-Defined Disorders and Sleep Health Traits to Advance Sleep and Circadian Genetics and Dr. Elizabeth Klerman's Adding Sleep and Circadian Rhythms to Medicine.
Leslie Head and Alexandra Wharton at SLEEP 2024
May 2024
The board of Directors of Circadian Sleep Disorders Network welcomes its newest member, Maggie Leppert. Maggie was appointed by the Board to fill a vacant slot, and to assist the secretary.
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Apr 4, 2024
The NIH's Sleep Disorders Research Advisory Board (SDRAB) met on April 4 and 5, 2024 in Bethesda, Maryland. The purpose of the meeting was to update the advisory board and public stakeholders on the progress of sleep and circadian research activities across NIH, and the activities of federal stakeholders and interested organizations.
Alexandra Wharton, CSD-N's representative on SDRAB, traveled to the meeting to present our recently published paper, Registry and Survey of Circadian Rhythm Sleep-Wake Disorder Patients. In her 15-minute talk, she highlighted survey results regarding diagnosis, tiredness, work impact, co-morbidities and treatments. You can view the talk here (talk with slides), or the slides only here (slides only).
She emphasized that Circadian Rhythm Sleep-Wake Disorders (CRSWDs) have a devastating effect on the lives of patients and that these conditions should be considered physiological — not psychological — conditions.
CSD-N's patient survey found that 24% of patients took 10 or more years to receive accurate diagnosis and that 77% were misdiagnosed initially — many with multiple incorrect diagnoses over the years.
Many of our survey respondents reported that their sleep disorder preceded their depression, suggesting that the sleep disorder may have caused the depression rather than the depression causing sleep problems as commonly diagnosed.
The presentation was well received. Findings about the prevalence of sighted non-24, the ineffectiveness of light therapy and the dangers of phase-delay chronotherapy were of special interest to attendees.
Alexandra urged for earlier diagnosis for CRSWDs, asking about best practices for screening patients. For example, she asked the group of clinicians and researchers if it could be possible to routinely administer the Munich Chronotype Questionnaire along with the Epworth Sleepiness Scale at a patient's initial appointment.
She also touched on the potential of DNA testing to help diagnose CRSWDs, although it is not yet widely available.
Several other talks at the meeting were focused on the importance of sleep for maternal health and pregnancy:
Dr. Erik Herzog, biology professor and lab director at Washington University in St. Louis, gave a talk entitled Time to Deliver: Maternal-Fetal Circadian Communication. He explained that there is little known about how the fetus entrains to the mother and how this might impact gestation length. Studying daily rhythms of maternal and placental signals and their roles in birth timing has the potential to translate into clinical care for healthy pregnancies.
Dr. Christina Park, officer for the NIH's Environmental influences on Child Health Outcomes (ECHO) program, described that ECHO's goal is to investigate how environmental exposures early in life — including biological, social, behavioral, natural, and built environments — affect child health and development. ECHO focuses on five key pediatric outcomes that are intertwined with sleep: pre- and post-natal outcomes, upper and lower airway, obesity, neurodevelopment and positive health.
Dr. Gina Wei, senior scientific advisor on women's health with the NHLBI, presented, Women's Health and Maternal Health Research: Opportunities for Sleep Science. She examined risk factors that may affect a woman's likelihood for coronary heart disease. These factors include hormonal changes, high blood pressure, diabetes and lack of physical activity and sleep.
Feb 2024
Circadian Sleep Disorders Network is featured as the "Patient Organization Highlight" on page 17 of the latest issue (Vol 5 Issue 1) of Healthier Sleep Magazine, published by the World Sleep Society.
Jan 2024
Member Stephen Larroque was interviewed for an article on his experience with Non-24 in Zeit Wissen magazine. An audio podcast, Der Mann ohne Zeit (the man without time), with him and two research doctors, is available here in the green box near the top of the page. Stephen's comments are in English, but the interviewers and doctors are speaking in German. Note that the text on the web page above is not taken from the interview
Jan 2024
Our president, Peter Mansbach, and board member Alexandra Wharton were interviewed for this article about Delayed Sleep Phase Syndrome (DSPS):
Delayed Sleep Phase Syndrome: Why Your Internal Clock Keeps You Up at Night, by Arielle Burton (CNET Jan 24, 2024). We don't agree with everything in the article, but it is sympathetic and helps raise awareness.
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