REMRunning Capitol Hill

by julie on October 11, 2010

 
 

On a sunny warm October day, I slowly ascended the white marble steps of the Rayburn House Office Building at 1:30pm. I clutched my briefcase tightly. These were my first steps towards advocating for greater awareness and research funding for narcolepsy on Capitol Hill.

After passing though security, I looked to my right and left. In both directions, expansive hallways of white marble extended in both directions. A small plaque directed me to the elevator to reach my Representative’s office on the Second Floor.

Once inside the office, I met with the health staff member for my Congressman in plush leather chairs. She was upbeat and I instantly felt calm around her.

She opened, “Narcolepsy has to do with sleepiness, right?”

This was my cue – a cue I’d practiced many times.  I explained that narcolepsy began stealing my knees from me in moments of laughter and eventually led to full-body collapse/muscle paralysis. I explained that narcolepsy is much more complicated than “sleepiness,” and I believe this health care staffer took my message to heart.  My voice never trembled; my words danced off the tip of my tongue with ease.  In conclusion, this staff member suggested tangible ways her office may be able to help us increase awareness in the future.

Descending the steps of Rayburn, I felt like I was walking on water. This visit was a successful and empowering experience.

Later that evening, I helped lead a training session of about 40 people who came to the Narcolepsy Network conference early to participate in our official Advocacy Day on Capitol Hill 2010.

On Friday, I returned to Capitol Hill again, only this time, I wasn’t alone.  My fellow patient advocates were spread throughout the Capitol Hill complex of House and Senate office buildings, spreading awareness and advocating for narcolepsy research. The day was overwhelmingly successful.  This was just the beginning, yet I believed more than ever that my dreams of improving the lives of people with narcolepsy will be realized.

A big THANK YOU to all those that prepared for and participated in this event. Each and every contribution was invaluable.  

Note: If you’d like to get involved in advocating for narcolepsy in the future, please contact me at: julieflygare@gmail.com. It’s certainly not too late to get involved. We’re just getting started!

Check back soon for an update about the Narcolepsy Network National Conference…

{ 3 comments… read them below or add one }

Amelia Swabb October 12, 2010 at 11:31 am

So glad your visit was successful!

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tricia higgins October 12, 2010 at 3:09 pm

You were a very large part of the successful march to Capitol Hill. My day started by leaving the hotel with a buddy at 7 am. The day was thrilling and exhausting. I look forward to my next visit.

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Jessica J. H. Utley October 18, 2010 at 12:26 pm

Hi!

This is a bit random, but I was just recently diagnosed with Narcolepsy… two weeks ago, and since then I've been doing a lot of research… that led me to your blog!

I'm a "retired" runner (though I'm only 25), and I live just south of DC (C-ville, VA). I hate that I JUST missed the conference in Arlington… I didn't really know what Narcolepsy was until I was diagnosed.

Anyway, you put your e-mail address down for people who would like to get involved. I thought it would be a bit strange for a stranger to send you an e-mail out of the blue, so I'm posting here.

I have not met a single person who knows what Narcolepsy is, or takes it seriously, since I found out about my diagnosis. I would love to connect with others (outside of the WWW) and get involved, but I don't really know where to start. I'd love to hear your thoughts… and if you aren't too freaked out by my ridiculously long comment, feel free to e-mail me: jjhutley@gmail.com

I have a blog, though I haven't posted in a while –

jessicajhutley.blogspot.com

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