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 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 MoreIn Retrospect & Call for Submissions
I have a confession to make regarding exercise and narcolepsy. Although I rarely think I’m wrong about much, I must admit I was wrong about something on this blog. Athletics had always been a huge part of my life, yet I stopped exercising altogether when diagnosed with narcolepsy and cataplexy. As you know, I reincorporated…
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! …
Read MoreFrom Start To Finish
The first half of the marathon, running through Hopkinton, Ashland, Framingham and Natick can be summed up in one snapshot – me being passed. I wasn’t passed by a few runners, I was passed by everyone. The gazelles flew by first, rubbing elbows with me as they weaved their maze around the slower runners –…
Read MoreA Science Project Worth Running For
With just less than a week to go before the big day, I’m proud to report that I’ve exceeded my fundraising goal of raising $5,000 towards narcolepsy research! Thank you so much your generous contributions. I’d like to share some exciting news about the important research that will be supported with this money. Well, there’s…
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