Five candidates have volunteered to run for Circadian Sleep Disorders Network Board of Directors. All have been formally nominated by the current board. Two are incumbents: James Fadden, our vice president and a founder of the organization, and Lynn McGovern, our newsletter editor. The other three, Alexandra Wharton, Kalle Widell, and Kevin Williams, would be newcomers to the board.
There are four openings on the board, and the four highest vote-getters will be elected, so your vote counts! All dues-paying members current as of Nov 20 are eligible to vote, regardless of whether your membership expires in 2018 or 2019. Members should receive ballots by email, from BallotBin.com, on or about Dec 1. Voting closes on Dec 15. Results will be announced shortly after. New board members take office at start of the next regular meeting, which begins Jan 15, 2019.
The candidates have submitted statements supporting their candidacy. These are listed below, alphabetically by last name.
I was one of the founding members of CSD-N and have served as Vice-President since then.
I have been an activist on behalf of circadian disorders for over 20 years. My case of non-24 hour sleep-wake cycle disorder was the subject of two papers from NIH. I have appeared on Ted Koppel's Nightline television program.
In the 1990s, I was the first person in the world to propose and implement the use of blue-blocking goggles and filters, and red and amber lights for Non-24. My education includes a biochemistry egree from Harvard and I have become deeply engaged in keeping abreast of the research on circadian disorders.
I contributed over 1,000 posts to the Night Owl mailing list and administer the Facebook N24 group. I run the DSPS blog founded by Beth Macdonald who passed away in 2017
In 2010 I started a letter writing campaign to NIH and spoke to the Sleep Disorders Research Advisory Board.
In 2011 I helped Peter Mansbach get CSD-N started. I spearheaded CSD-N's effort to get Non-24 included in the National Organization of Rare Disorders (US). With Dr. Katherine Sharkey I wrote a detailed paper on Non-24 for NORD. In 2017 we published an update of this report with exciting new information.
In 2015 I published What You Need to Know About Non-24 in the journal Sleep Review . A top sleep researcher has called it the best-written article on Non-24.
I have contributed several articles and numerous references to the CSD-N web site. I have been active in CSD-N's lobbying activities with government and industry, and have spoken about Non-24 to a support group for parents of blind children.
Most recently I have worked with Peter and other board members to create the first circadian rhythm disorders survey and patient registry.
If elected I hope to continue to be active in helping persons with circadian disorders achieve the understanding, respect, and help that we need.
I was elected to the Board of Directors in 2016, and would like to continue my work with CSD‑N.
I have personal experience of Delayed Sleep Phase Disorder, and like many sufferers went undiagnosed for much of my life. In terms of practical skills, I have extensive writing and editing experience, and have written a variety of material to strict deadlines over the past decade. During this time, I have written and edited web material, corporate wellness programmes, e-books, magazines, and print books. I have utilised this experience on the Board by becoming the newsletter editor. My current job involves digital marketing, so I also have some social media skills.
During my time on the Board I have represented CSD-N twice: during a BBC radio interview and at the SLEEP 2018 conference. I would welcome any further opportunities to continue to raise awareness of circadian rhythm disorders and CSD-N.
If elected, I would be excited to continue to work with the organisation. There is such a lack of understanding and awareness out there about these sleep disorders, and I would like to play a small part in raising awareness, providing information, and reducing stigma.
It would be an honor to serve on the Board of Directors of CSD-N. As a longtime member, I find CSD-N to be an essential resource for living with all aspects of Delayed Sleep Phase Disorder (DPSD).
From understanding its physiological underpinnings, to gaining emotional support from people who "get it," CSD-N's website, listserv and FB group offer invaluable news and advice for those coping with a circadian rhythm disorder (CRD).
I'm eager to help CSD-N execute on its mission of increasing awareness of CRDs among both the medical community and general public.
Having a sleep disorder carries a stigma that does not exist with other health conditions. Although circadian rhythm sleep disorders are physiological conditions, most people believe CRDs are psychological - the result of lacking willpower or discipline.
I'm passionate about working with CSD-N to change this outdated mindset. Recent medical breakthroughs and genetic discoveries validate the physiological differences CRD sufferers have from those of typical sleepers.
Through online communities, I've learned about and joined three genetic studies for DSPD. The findings of these studies could encourage more funding and research and I'm interested in how to increase the amount of participants. I'm also interested in how genetic findings could be used for formal diagnosis, which we know is important for treatment and accommodations.
As a chapter leader for Start School Later, I advocate for healthy hours to accommodate teens' delayed sleep onset. I've testified at a state Senate education committee hearing and I am meeting with legislators to ask them to co-sponsor a bill requiring that school begin no earlier than 8:30 am. Of course, I use these opportunities to discuss circadian rhythms and sleep!
My background is in marketing communications, public relations and social media. I'd love the opportunity to use my skills to help CSD-N advocate for the CRD community.
Thank you for your consideration.
I'm a non 24 person living in Uppsala/Sweden. I hold a MSc in engineering and have been working for Uppsala Clinical Research for the last 6 years. There I create software for measuring health care quality / collect data for epidemiological studies and for clinical trials.
I want our situation to improve and feel I have the spark to put in energy to do that. My background in tech and life sciences might be of help. Specifically I'm interested in how we could access some of the relief and understanding more common disorders enjoy. Also I'm interested in that we utilize tech and media as good as we can to present and understand our condition.
Self judgement on qualifications desired.
Law: I dont have much knowledge of applicable law, other than GDPR and some swedish healthcare/integrity laws.
PR: I probebly know more than average. Worked a couple of years with the aspects of internet advertising (SEM, RTB, DSP etc). There im near pro. I'm also fair on graphical work.
Accounting: Fair, have experiance running a Company + uni course.
Other non-profit: I usually don't jump at volountary assocation work
I would like to be considered for a position on your organization's Board of Directors. My interest comes from my belief that my son suffers from a circadian sleep disorder and the difficulties he has faced not only getting diagnosed but also getting any treatment. Looking back, this probably affected him in high school if not sooner. I was never aware of such a condition especially among the sighted. There's obviously a need to increase awareness and develop treatment which I would like to be involved. It is very difficult for someone like my son to manage a typical nine to five job. He couldn't really survive a typical college schedule.
My experience in the non-profit world is as follows: Since my stroke in 1999, I have been a volunteer with both the American Stroke and Heart Associations. I was involved in both their TTES and Start Training programs. These programs educated participants on the benefits of exercise and diet in reducing the risk of stroke and heart disease. The programs trained the participants to walk or run a half marathon. I was a motivational speaker at many events to explain the warning signs of stroke and what you could to help prevent.
For eight years I was a volunteer crisis counselor at the Contra Costa County Crisis Center, a 24/7 hotline service to assist people in crisis and connect them with county resources such as food, housing and health services. While I was there, I also served as a grief counselor and was on the Finance Committee.
Educationally, I hold a B.S. degree in Economics, a M.B.A. degree in Finance and have completed a certificate program in non-profit management.
I would definitely like to work toward increasing the public's awareness of circadian sleep disorders so that they could be more understanding of those affected and work toward better treatments.