Running the Chicago Marathon, a man named John and Neurofibromatosis

Me & My friend John

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 7th grade religion class at our parish.  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. (See bottom of story to learn about NF.)

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 run the Chicago Marathon for a second time but this time, I wanted to do it 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.

As the registration date was getting closer for the 35th Annual 2012 Chicago Marathon, I started looking into the various charities. There are hundreds of charities to choose from.  But then, as fate would have it, the day before the Chicago Marathon registration opened, my wife received an email from NF Midwest.  The subject was “A Unique Opportunity.” And there it was, it said “RUN FOR A CAUSE and choose NF Midwest as your charity of choice.”  Neurofibromatosis does not have a big name spokesperson or a big budget.  I could raise money for NF, and I could raise awareness. 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.

After I made the decision to run for NF, I decided to I wanted to do more.  In fact, I decided to go even further than just an extra mile.  I decided to go and extra 157.2 miles and run 12 half marathons in 12 states in 2012 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 ran the 2012 Bank of America Chicago Marathon for you!

From NF Midwest: Michael is continuing his running, awareness and fundraising in 2013. To runners everywhere, we encourage you to run for a charity. What cause do you believe in?  Who do you know that needs a hand?  You have the power within you to help someone that needs it.

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.

Michael Blaha

FOR MORE INFORMATION AND TO FIND OUT HOW YOU CAN HELP CONTACT JENNY PERKINS

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