Listed alphabetically by last name.
My name is Rachel Amon (Rachel Victoria in the DSPS Facebook group). I'm interested in running for the CSDN Board of Directors. I think the CSDN website is an incredible resource for people with DSPD, and the work CSDN does is very important. In fact I've always wanted to work in some kind of policy advocacy. My disabilities derailed that as a career, but serving on the CSDN BoD seems like a good way to contribute what I can.
I have a J.D. from Michigan State College of Law, though I am not a licensed attorney, so I know how to research, understand, and summarize regulations and legal writing. I have a little experience with non-profits, as I interned with the Sierra Club Responsible Trade Program in DC for four months, and while there I observed some lobbying on the Hill and attended several conferences. I also participated in the Urban Agriculture Practicum at MSU Law, which involved helping various stakeholders, including non-profits, reach mutually beneficial agreements. While in law school I earned a mediation certification and also studied negotiation, so I have some practice with ADR if that would be helpful. I've never served on a BoD before, but I've been an officer in three undergrad and law school clubs, as well as my hometown's Rocky Horror Picture Show cast. I'm active in the internet disability community on both Facebook and Twitter, and I enjoy helping my fellow disabled/chronically ill/neurodivergent people find the information they need. My strengths are primarily research, writing, and editing. I would definitely be able to meet the requirements for online meetings, and I live in my state's capitol city so I may be able to meet with legislators in person as well.
Thank you for the opportunity to run!
My name is Samuel Bearg. I'm applying to the CSDN board for the second time. The first was in late 2013, which was shortly after I joined the Niteowl mailing list.
I'm in my 30's, and I've had a circadian rhythm disorder for as long as I can remember. Some of my earliest memories are of being exhausted in preschool, after not falling asleep until far too late the night before.
I've greatly enjoyed discussions on the mailing list (and more recently the Facebook groups) over the years. One topic that I've discussed is the use of chronotherapy. I believe that I'm the first person to suggest that doing chronotherapy with a larger delay may be safer than with a shorter delay. Despite one form being potentially safer, I do believe that all forms carry risks of causing N24 and that anyone considering it should be warned of the dangers.
I have some web development skills and a STEM background. I'm currently working full time. I don't have an excess of free time, but I believe that I have plenty to fulfill the duties of a member of the board. I've been considering leaving my current position to go back to school, which might offer me more free time.
I suffer from Delayed Sleep Phase Disorder. You can read my story with DSPD here on our website.
I founded Circadian Sleep Disorders Network in 2011, and I've served as president and webmaster since then. I'm retired from paying work, and I'm devoting my full time efforts to CSD-N. It's time consuming, but rewarding.
As president I chair board meetings, respond to inquiries from interested people and organizations worldwide, represent the organization at some sleep conferences, and attend some sleep meetings at NIH. I have given several talks to raise awareness of circadian disorders. I've done virtually all the coding and provided a lot of the content for our website, www.CircadianSleepDisorders.org. I've worked with other board members to create our brochures and Q&A documents. As other volunteers have had health problems I have filled in for them to keep the organization going.
Our major project for the past three years has been the creation of a patient registry and survey. With input from other board members I developed the survey questionnaire and interfaced with Invitae, the company hosting the survey, to make it a reality. I summarized some early results and hope eventually to publish a paper with the help of other board members and volunteers. I hope these results will trigger additional research on our disorders and their treatment.
Preliminary survey results helped inform our Needed Research document which I helped write. We submitted this document to the AASM/SRS/SRBR White Paper working group on needed circadian rhythm research.
I have attended meetings of the NIH Sleep Disorders Research Advisory Board (SDRAB) regularly for the past eight years, each year urging NIH to add a description of circadian rhythm disorders to their sleep web pages. Several years ago I organized a letter-writing campaign by our members to that end. Finally, in October of this year, they did add a page on circadian rhythm disorders.
I recently wrote an article on Circadian Rhythm Sleep Disorders for the AAST (American Association of Sleep Technologists) which appeared in their 2019Q3 issue of A2Zzz magazine.
We all know the difficulty that people with circadian disorders have, in getting understanding from those around them, and accommodations at school or work. We badly need to raise awareness of these disorders, in the medical community as well as the public, and to get accommodation if treatment is not effective. We need to advocate for more research. We've made a good start. I will continue to pursue these goals.
Please vote for me to allow me to continue working on the Board of Directors.
No statement has been received.
I would be interested in continuing to serve on the board of directors for the Circadian Sleep Disorder Network.
I am interested because despite having suffered from Non-24 my entire life, I only recently discovered my "sleep problems" were actually a medical condition and not just "me not trying hard enough". This discovery and subsequent acceptance and management of a non-24 hour schedule has been very difficult, but also the best thing that has happened in my life.
I want to get information out there, so people with similar issues can learn about them and how to deal with them without having to spend 31 years of their life not understanding why they're suffering, and so that the general public understands how to interact better with people with these disorders.
I am a Lawyer in the state of Wisconsin, and have a Public Policy masters, with a modest amount of grant experience. I believe my most useful skills would be legal research and writing/communicating technical and human subject matter to laypeople of various backgrounds, but I have a myriad of skills and can easily do nearly anything if required.
Thank you for your consideration.