Posts Tagged ‘Narcolepsy’
The Wizard of Narcolepsy
Surely I’d set myself up for disappointment. There was no way anyonecould live up to the image I’d created in my head. Like the Wizard of Oz, this Wizard of Narcolepsy was sure to disappoint. I sat in a cushy red and gold chair, facing the front of the ballroom, along with about 200 conference attendees.…
Read MoreREMRunning Capitol Hill
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…
Read MoreFrom Heartbreak Hill to Capitol Hill
In Boston, I took on Heartbreak Hill. In Washington DC, I’m taking on Capitol Hill! Tomorrow, I will be visiting my Congressman as part of Narcolepsy Network’s Advocacy Day on Capitol Hill. To see the official Press Release, click here! Over the last year, I’ve talked about my narcolepsy A LOT – telling anyone who is kind enough…
Read MoreSuperman Saves My Day
You never know where a run will take you. In the case of my first training run, I didn’t expect to end up in the parking lot of a Best Western Hotel, a sweaty mess, waving down my roommate. The first half of the run was euphoric (as detailed in my last blog post). I ran past…
Read MoreOff the Ground and Running
Columns of buttery yellow sunshine spread across a crystal blue sky. A few fluffy white clouds drifted aimlessly above. As I ran long the Potomac River at sunset yesterday, I found something I hadn’t realized I’d been missing. Recently, my life changed dramatically. At the beginning of September, within one week, I started a new job working full-time and moved apartments to a whole new area of…
Read MoreDuring the Off-Season: REMRunner Visits the National Institutes of Health
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…
Read MoreCrossing the Finish Line… All Over Again.
The marathon was months ago. My running shoes are now collecting dust and climbing a few flights of stairs leaves me winded. Yet, I recently received news that transported me right back to marathon day – news so exciting that I felt like throwing my arms up in the air and doing a few big…
Read MoreNarcolepsy with Cataplexy on Nightline TV Show
This Thursday, August 19th 2010 at 10pm, ABC’s “Nightline: Secrets of Your Mind” will feature a story about narcolepsy with cataplexy – about a man who’s emotions literary paralyze him. I highly suggest everyone tune in – it looks like it will be a very interesting program: http://abcnews.go.com/m/screen?id=11410135&pid;=4380645 Check it out and let me know…
Read MoreChasing Fireflies
Everyone talks about the unbearable heat of Washington DC in the summertime, and rightfully so, as it’s been so hot recently that I’ve worked up a sweat just walking to Starbucks for a Frappuccino. Because of the extreme heat, I haven’t been running too often, but if I do, I go out either early in…
Read MoreAfter the Party Is the After-Party
In the after-glow of the marathon, I made my way from the finish line over to Sonsie Restaurant on Newbury Street, where Wake Up Narcolepsy was hosting a post-race celebration for its four marathon runners and their supporters. Although physically drained, I was still “flying high” with awe and excitement that I’d actually done it! …
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