During the Off-Season: REMRunner Visits the National Institutes of Health

by julie on September 19, 2010

The room was silent. The portable microphone was ice-cold in the grip of my sweaty hot palm. Balanced against my left arm was my sheet of talking points. I wasn’t nervous about what I would say – I’d drafted my speech the night before. Plus, these words didn’t need to be memorized – they were deep in my heart.

REMRunner Outside NIH’s Campus

About 30 people dressed in formal suits piled around a large conference table. Another 20 individuals sat around the edges of the room, myself included. I was visiting the National Institutes of Health (NIH) for the day. A few hours earlier, at 8:15am, I received my Visitor’s Pass to enter the NIH Campus. A security guard pointed me towards the appropriate conference center. I’d walked with my head held high along the well-manicured path towards the building. I wore my favorite formal skirt suit and shiny leather shoes.

I was at NIH representing Wake Up Narcolepsy in a public meeting of the NIH’s Sleep Disorder Research Advisory Board (SDRAB). The Board was meeting on this day, Friday August 27th, to discuss the future of sleep research and set a plan of priorities for sleep and circadian rhythm research for the next five years. Earlier in the summer, the Board issued a Request For Information to researchers, stakeholders, patient organizations and other interested parties asking for input.

Wake Up Narcolepsy sent a response detailing what our organization believes are important priorities for the advancement of sleep research in the upcoming years. Now, just a few months later, I sat in a formal boardroom with prominent sleep researchers and NIH representatives. After a few hours of introductions, questions and presentations, it was almost time for lunch. Everyone was ready to break, having been sedentary for hours already. Yet, before lunch, the “Public Comments” section of the schedule arrived. This was my opportunity to speak.

I rose from my seat, took a deep breath and began speaking into the microphone. I explained that I was there on behalf of Wake Up Narcolepsy(WUN), a non-profit organization founded in 2008 to raise awareness about narcolepsy and raise funds for narcolepsy research. I proudly spoke about WUN’s golf outings and Boston Marathon fundraising efforts. I detailed where Wake Up Narcolepsy’s funds had gone to date – including grants to Stanford’s Center for Narcolepsy, narcolepsy research at Harvard Medical School and to the national patient organization, Narcolepsy Network.

I finished by emphasizing Wake Up Narcolepsy’s sense of urgency in funding narcolepsy research. I highlighted a few possible “priority” areas for the future of narcolepsy research, including the research currently taking place at Stanford exploring the possible autoimmune connection to narcolepsy. I explained that this research is currently being funded entirely by private resources, including funds from WUN. In closing, I encouraged the Board to make narcolepsy an important area of focus for NIH sleep research in the next five years, emphasizing that narcolepsy research will likely lead to advancements in other areas such as insomnia, obesity, autism, schizophrenia, and bipolar disorder.

In giving these few remarks, I never once looked at my notes. Instead, I looked into the eyes of the individuals around the table, all of whom listened intently. I successfully delivered my message.

Multiple individuals approached me during the lunch break to ask me more about my experience with narcolepsy and running the marathon! In the afternoon session, the Board began to outline the goals of their Research Plan for the next five years. The Board will continue to work on this in the coming months and I look forward to seeing their final product. By spending the day at their public meeting, it became very clear to me that these individuals care deeply about sleep disorder research and the people affected by these conditions.

This was a very special day for me. I stood proudly, as a person with narcolepsy and as a patient advocate. It was an honor to represent Wake Up Narcolepsy before the NIH’s Sleep Disorder Research Advisory Board. A special thanks to Patricia Higgins, President of the Narcolepsy Network’s Board of Trustees. Tricia has been a role model and dear friend over the last couple years and she was sitting at my side this entire day. When it came time for me to speak, she encouraged and calmed me. Her support means the world to me.

I look forward to continuing my work here in the Washington DC area to spread awareness about narcolepsy and advocate for funding of vital narcolepsy research. In just a few weeks, on Friday October 8th, I will be participating in the Narcolepsy Network’s Advocacy Day on Capitol Hill.

If you’d like more information about my advocacy efforts or would like to get involved, feel free to contact me.

{ 2 comments… read them below or add one }

Patricia Higgins September 20, 2010 at 9:51 am

Dear J,
The photo is great, the suit fabulous, and the gal the best.
You did a marvelous job at NIH and I equally felt honored to be a a part of that venue.
I hope our paths continue to cross and that there are no limits to what we can do.

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Amelia Swabb September 21, 2010 at 1:52 pm

Amazing Julie! Great to hear you are doing well and doing great things! xoxo

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