Running the Halloween Half Marathon Neurofibromatosis

Entering Ohio on a rainy afternoon.

You might look at me and think I am just another runner who wants to run in every state and maybe in many ways I am.  Like most runners I work towards setting a new personal record.  But there is more to my story and why I am running the Halloween Half Marathon.  Mine is a story about a young man named John who has Neurofibromatosis (NF) and my running.  I have been running almost as long as I have been teaching 7^th grade religion class at our parish in Oak Lawn, Illinois.  Last year, I became aware of Neurofibromatosis, when I learned that a former student of mine named John is struggling with the genetic disorder that affects more than 2 million people.  I never realized that he had Neurofibromatosis, in fact; I didn’t even know what Neurofibromatosis was.

Neurofibromatosis (NF) is a progressive genetic disorder of the nervous system.  It causes tumors to grow on nerve tissue anywhere in the body and at any time, which often times result in terrible disfigurement, deformity, deafness, blindness, brain tumors, cancer and death.  Some tumors may be surgically removed, but they can grow back.  Neurofibromatosis is the most common neurological genetic disorder caused by a single gene.  Severity of Neurofibromatosis varies greatly.  In families where more than one person has NF, the physical signs and complications will vary for each person. Neurofibromatosis can affect people of all races and genders equally and symptoms vary from person to person.  Neurofibromatosis can occur in ANY family.

I always ran alone, thinking about myself and my goals, then I met a group of runners and began running with them.  On the average, I was 10 years older than most of them but they gave me the encouragement that I needed to run my first half marathon.   When I crossed the half marathon finish line I knew at that point I could do it.  I could run a half marathon and even better, I had the confidence to run a full marathon.  So in 2011 I ran my first Chicago Marathon.  I dedicated eighteen weeks to training for the marathon and my wife was always cheering me on.  She believed in me, supported me and made sure that I always had everything I needed.

The morning of the 2011 Chicago Marathon all I could feel was runner’s adrenaline; that feeling of excitement and anxiousness for the race to start.  I felt good and I started strong.  My pace remained around 9 minute miles, until I hit mile twenty-two and I started struggling.  My pace slowed to about 10 minute miles and I just kept thinking, finish, make it to the finish line and when I did I remembered the training, the commitment, and the support and I didn’t expect the struggle.  I felt for a brief moment last year after running the Chicago Marathon that this was my last and I wasn’t going to run another marathon but somehow like thousands of other marathon runners that all changed.  In retrospect, that last hour of struggling to finish the Chicago Marathon is pale in comparison to those who are struggling with Neurofibromatosis on a daily basis.

Every morning, I wake up thinking how fortunate I am to be able to run.  What would I do if I couldn’t run anymore?  I think about those who can’t run.  I decided I would do it again.  I would run the Chicago Marathon but this time, I wanted to do if for different reasons I wanted to do it for those that would never experience the thrill of crossing that finish line feeling that great sense of achievement.  I have found there is much more to running than just miles.  I am just one man who loves to run and I could make a difference and that difference is to help those that are less fortunate.

I’ve decided to dedicate my running to raising awareness for Neurofibromatosis.  Neurofibromatosis does not have a big name spokesperson or a big budget.  I could raise money for NF, and I could raise awareness, which in turn, would open new doors and make it easier for those that come after me to raise money for NF.  It seems that people are more willing to donate or even listen to your story when it is for something they have heard of.  In fact, there are about 2 ½ million survivors of breast cancer and over 2 million people who have NF, it’s that common.  It’s my opportunity to make a difference in the lives of those that struggle with Neurofibromatosis.  So step by step, mile by mile I am running to raise awareness of Neurofibromatosis.

A year ago I never even heard of Neurofibromatosis, since that time I have learned a great deal about NF as well as how John’s struggles with this genetic disorder. Since deciding to help raise awareness for NF I learned of two more people I know that struggle with NF and then I met another person at a Health expo.   So when you hear about Neurofibromatosis chances are someone you know has NF and if you are like me, you didn’t even know it.

Packet Pickup with Sheri

I am running 12 half marathons, in 12 states in 2012, and the Halloween Half Marathon will be my 10^th half marathon this year.   I am running to honor John and to continue to raise awareness for Neurofibromatosis. From Alaska to Boston, and Arizona to Florida I am running for a reason, I am running for NF.  In the past year, I have gotten to know John and his family a lot better and in a recent interview, John said “I didn’t know that anyone cared about me.”  Well now he knows.  So to John, and the 2 million others with Neurofibromatosis, I am the Halloween Half Marathon for you!

Pasta Dinner at Tony's at Englewood, OH