Jun 13 2019
Making a Difference to the Narcolepsy Community One Step at a Time

Making a Difference to the Narcolepsy Community One Step at a Time – A reflection by Mia Filippino

I had always thought that running the Boston Marathon (or really any marathon, for that matter) would be a one-and-done event to cross off my bucket list and then have zero desire to ever repeat again.  Running the Boston Marathon in 2015 with Wake Up Narcolepsy was exactly that for me: my first Boston, my first marathon, and even my first major fundraiser.  Yet, here I am again, and contrary to my original thinking, I am even MORE excited than I was a year ago.

The personal connection that I have to WUN’s impact continues to be a huge motivator for me as I look towards Boston 2016.  I was diagnosed with narcolepsy with cataplexy as a high school junior in late 2005.  However, I was struggling with the disabling and embarrassing symptoms for over two years prior and had seen multiple nurses, doctors, and dietitians before finally reaching a diagnosis.  Although my treatment regimen has made living with narcolepsy more manageable, the daily and nightly challenges still exist along with the judgments that are often associated with the symptoms I still display.

Another reason I am so thrilled to go through this process again is the incredible support that I received leading up to, during, and after the 2015 race.  First, the support from everyone who donated last year was amazing.  Not only did that generosity total $13,136, but I was also so touched at how so many people took the time to educate themselves about narcolepsy and its symptoms.  Second, the support from the WUN community was very moving.  From the WUN team themselves to fellow peers with narcolepsy to the kind comments on the WUN Facebook page, it was remarkable to know that my efforts were making such an impact.  Finally, the support from friends, family, volunteers, and total strangers along the route from Hopkinton to Boylston Street is what made the 26.2 miles actually fun.  Honestly, I thought you all had a harder job of cheering in the cold, rainy, windy weather than I had running in it!

So this time around, I kindly ask for your support again.  Wake Up Narcolepsy is dedicated to funding research into the causes, prevention, treatments, and a cure for narcolepsy while increasing awareness amongst the public.  Any amount donated is very much appreciated, and if you have just a few minutes, then please take the opportunity to educate yourself about this disorder.  By supporting my journey to the Boylston Street finish line, you will also be impacting my future and the future of all others with narcolepsy.