Delayed Sleeper

My Term on the NIH’s Sleep Disorders Research Advisory Board (SDRAB)

August 11, 2025

I completed my 4-year term on SDRAB last week. Here are some of the thoughts I shared with this amazing group of researchers, physicians and fellow patient advocates during my final meeting. I’m very encouraged that in recent years there’s been an increase in awareness of Delayed Sleep Wake Phase Disorder, which is characterized by an inability to fall asleep naturally until at least 4 am. It affects at least 1 in 600 people. Terms…

Published in Sleep Medicine: X Journal! CSD-N’s Survey Results Paper

April 9, 2024

PUBLISHED! Circadian Sleep Disorders Network’s patient survey paper is available for free in Sleep Medicine X! Check out results, some surprising, from hundreds of Delayed Sleep Wake Phase Disorder (DSWPD) and Non-24 Hour Sleep-Wake Phase Disorder (N24) patients. Several assumptions made by physicians in the past are called into question. Highlights include: 24% of Circadian Rhythm Sleep-Wake Disorder (CRSWD) patients took 10 or more years to receive an accurate diagnosis. Of the 55% of patients who…

Patient Advocate Panelist at SLEEP 2023

August 27, 2023

In June, 3,500 sleep professionals converged on Indianapolis to learn about the latest research on sleep and sleep disorders at the SLEEP 2023 conference. I was invited to present a talk about Delayed Sleep Wake Phase Disorder (DSPD) on a patient advocacy panel entitled: Delay in Diagnosis: How Health Disparities, Lack of Awareness, and Payer Policies Ultimately Impact the Patient. It was organized and hosted by Dr. Raman Malhotra, a sleep specialist and past president…

HB 363 in Texas – Establishing a Task Force to Study the Effect of Delayed School Start Times

April 18, 2023

EXCITING NEWS - there is NEW legislation regarding starting school later in Texas! H.B. 363 would establish a task force to study the effect of delayed school start times on students. Start School Later Texas collaborated with Representative Donna Howard regarding the bill in 2021 and were delighted when she filed the bill again in 2023. Here it is in its entirety: 88R2181 JTZ-D By: Howard H.B. No. 363 A BILL TO BE ENTITLED AN…

Joining the NIH’s Sleep Disorder Research Advisory Board As A Patient Advocate Representative

January 27, 2023

Note: I am honored to be appointed to the NIH's Sleep Disorder Research Advisory Board (SDRAB) to represent the circadian rhythm disorder (CRD) patient community. I wrote the following article for the Circadian Sleep Disorders Network: In December, CSD-N board member Alexandra Wharton virtually attended the NIH (U.S. National Institutes of Health) Sleep Disorders Research Advisory Board (SDRAB) meeting. This is the second consecutive term that a CSD-N board member is representing the CRD patient community on…

My Interview on Vice News

January 15, 2022

In March, I was interviewed on Vice News about my experience with Daylight Saving Time. Most people find it difficult to lose an hour of sleep when the clocks shift ahead every spring. But for extreme night owls like myself, it's one of the worst days of the year. You can watch the segment here. I'm encouraged by the 400+ comments - many wrote that they didn't know that Delayed Sleep Phase Disorder was a real…

Part 2 – My Patient Story on SRBR.org

March 1, 2021

This patient story was originally posted on Society for Research on Biological Rhythms (SRBR) Night owls have organized and our ranks are growing. Groups like the Circadian Sleep Disorders Network and B-Society are advocating for people with late chronotypes – building awareness of flexible work and school schedules, reducing stigma, and increasing federal funding for sleep research. Late chronotypes (“night owls”) are awake when most people are sleeping for different reasons. Some have a preference or habit for staying up late,…

Part 1 – My Patient Story on SRBR.org

February 6, 2021

This patient story was originally posted on Society for Research on Biological Rhythms (SRBR) As daylight fades, my brain and body start to wake up, and by the time it’s dark out, I’m feeling my best – physically and mentally. From reading to exercising to socializing, I do everything smarter, faster and better in the afternoon or later. Regardless of how tired I am during the day, or how little sleep I got the night before, I can’t…

Did Elvis Have Delayed Sleep Phase Disorder?

August 16, 2020

43 years ago today, Elvis died at his Graceland mansion in Memphis. He was just 42 years old. Although Elvis' actual cause of death was listed as cardiac arrhythmia, it is believed that his chronic prescription drug abuse contributed to his demise. Beginning in the 1960’s, Elvis developed a dangerous dependency on amphetamines, sedatives and barbiturates. Much has been written about what drove Elvis to self-medicate - was he trying to cope with fame, the…

Talk at the Stanford MedX Conference

January 15, 2020

At the Stanford Medicine X conference in September, I gave a talk titled 'Night Owls and Late Chronotypes Unite — Let's Stop Living Against Our Body Clocks.' I explained what Delayed Sleep Phase Disorder is, the challenges of diagnosing it, and its possible causes including recently discovered genetic variants. Attendees learned that the 2017 Nobel Prize for Medicine was awarded to scientists studying the circadian clock, and that research in how a person's circadian clock affects their…

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