REMRunner Returns to the National Institutes of Health

Last Friday, April 29th, was a beautiful sunny day in Washington DC. I was up by 6am to make the journey to Bethesda, Maryland, through NIH security, and across the Campus to Building 31 by 8:30am. Entering the conference room a few minutes early, I couldn’t help but smile a big gawking smile when I noticed the many friendly familiar faces around the table.

For me, this story began almost a year ago, when I received word that the National Institutes of Health had issued a Request for Information (RFI) asking for input on the public perspective and need for biomedical sleep disorders research in the future. Of course, I had an opinion on the topic!

I learned that this input would be used to inform the National Centers on Sleep Disorders Research (NCSDR), the Sleep Disorders Research Advisory Board (SDRAB) and a Trans-NIH Sleep Research Coordinating Committee in creating a revised National Sleep Disorders Research Plan for the next five years.

Last June, I worked with Wake Up Narcolepsy (WUN) in preparing and submitting it’s official response to the NIH’s RFI.  In August, I attended the SDRAB’s public meeting and had the honor of speaking before the Board on behalf of WUN, detailing what our organization feels are important priorities for the progress of sleep disorders research. (Read more about this experience here.)

During last August’s meeting, the SDRAB Board took in an overwhelming amount of input from various stakeholders. Then, they got to work –  discussing the Research Plan and drafting some preliminary language.  Although the experts and leaders around the table were a very capable and accomplished group, the task before them seemed daunting.

I couldn’t help but wonder how they would:
1. take all the public and trans-NIH input into account,
2.  identify the key opportunities in the vast field of sleep and circadian biology research, and
3. create a clear and comprehensive plan to guide research for the next five years?

Last Friday’s SDRAB meeting marked an exciting day, as the Research Plan was now very close to completion. Daunting or not – they did it! I was impressed by the successful collaboration of those who made this plan a reality.

It was clear that months of hard work and time went into this project, not by one person but by many – including the SDRAB Board, their special subcommittees, the NCSDR staff and the various supportive NIH Institutes, Centers and Offices.

Once finalized and approved by the Director of NIH, the National Sleep Disorder Research Plan 2011 will be available to the public.  I look forward to sharing this soon!

But I must admit, it wasn’t the plan itself that kept bringing a smile to my face throughout the day last Friday. It was the people behind the plan. Most of them I met last August, a few I met much earlier, and others I’d never met before. Yet, I was overwhelmed by how welcoming and respectful everyone was of each other.

Living with a sleep disorder like narcolepsy can be isolating at times. Last Friday was one of those unique experiences when the opposite was true. My journey has been a long one – from keeping my experience a secret in law school to standing in front of a microphone on behalf of myself and others.

Thank you to all those that made this an informative meeting and special day. From myself and the 40 million other Americans living with sleep disorders – thank you for working tirelessly on behalf of the tired!


  1. livingwithn24 on May 6, 2011 at 7:40 pm

    It was great to see you at the meeting. I was very pleased at the genuine desire of the researchers to help advance understanding of all sleep disorders. This plan will be a big step in that direction.

  2. Eric Johnson on May 9, 2011 at 5:22 pm

    Thank you so much for going to this meeting and reporting back to those of us not in the Washington DC area. This sounds like such a positive step in the right direction for sleep and narcolepsy research!

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