For Real Awesome Virtual Walk/Run for Narcolepsy

July 14th, 2012 is a date that will stick in my mind forever.  At 9:30 that morning, I set out to complete my run for the first ever Virtual Run/Walk for Narcolepsy Research.  In just two short weeks, 38 people “liked” the Facebook page – more than I thought since it was created on a whim with such a short amount of time.  I didn’t have time to really get the word out since I had so much going on at work and school, but somehow it got out to a few dozen people anyway.  We even had a person with narcolepsy from Panama join us!  It was a beautiful, humbling experience.

As I set out that morning, it was already 85 degrees and warming up quickly.  After a five minute walk to warm-up, I started jogging. Wanting to make sure I had SOME sort of photo to share, I snapped this photo:

Since no one was with me to take a picture of me running, I snapped this picture of my shadow. It’s somewhat poetic….

Down the hill, a right turn, and another right turn got me to my destination – a little trail winding through a wooded area.  I figured this would get me some shade.

About a mile into my run, I started to feel the heaviness of the heat. I also ran by this temptress, beckoning me to just rest, even if only for a moment. I imagined flipping it off and ran a little faster instead.

As I ran the next half a mile, I thought about the reasons why this run meant so much to me. Being on message boards and in Facebook groups, I get to talk with a lot of people with narcolepsy. We share so much with each other than I feel like I know about a little piece of each of their lives and that piece – living with narcolepsy – is so much like my own life. While I was running alone that day, I didn’t feel alone as I was thinking about all of them. I was running for all of them.  Because of that, I decided to stop and take a little video to thank everyone who participated. (You’ll have to excuse my out-of-breath speaking and my sweaty appearance!)

Once I made my video, I finished my trail run and went back home.  Remember when I said I started out running downhill?  Yep, that means I had to run UPHILL on the way back home.

It doesn’t look that bad until you run it yourself…kind of narcolepsy doesn’t seem that bad unless you have it.

It was a metaphor come to life.  As I was climbing the gradual, seemingly never-ending hill, I thought that it felt a lot like most days.  I start out feeling okay in the morning, and as the day goes on, I encounter a big flippin’ hill every so often.  If I fight it and don’t either medicate or take a nap, it ends up being a long and grueling process until I finally get to the top and want to collapse anyway.  I ran up about half of it before finally having to give in and walk the rest.  I do know my limits, and I hit them that day.  My heart rate was way up there, and I was just too hot.  It wasn’t the best run ever, but it didn’t matter because I made it to the end.

At the end of the trail run

For the rest of the day, I checked the Facebook page and my Twitter feed.  As I saw others posting about their walks and runs, I felt so empowered and like I really did something that could potentially be a catalyst for change.  I’m so thankful to Makenna’s mom, Chris,  for inspiring me to put together this event.  She had 20 people walking with her, and they raised a little over $1300 to send to Stanford!  I raised just over $350, so that brings the total to a little over $1600!  How’s that for awesome?! Hopefully, I can get my act together earlier next year so that we can have a real fundraising page and have time to get more people signed up to participate.

I’m so lucky to know a group of caring, understanding people that inspire me every day to do whatever I can to raise awareness about narcolepsy.  I’m so honored to have run for them and for myself.  Although the run was virtual, it was for REAL awesome.


  1. Julie F. says:

    Hip Hip Hurray! Go Heather, Go! I love this post about the virtual run/walk for narcolepsy research. Great video – with all the sounds of critters along the trail. I gotta find the Facebook page and make sure I “like” it.

    Thanks for sharing your journey and for raising funds for narcolepsy research! Cheers, Julie


  1. […] I started using the Narcolepsy Network’s brochures to send to schools.  I organized the Virtual Run/Walk for Narcolepsy after being inspired by a child with narcolepsy.  Two other PWN and I conducted the first […]

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