Saturday, October 6, 2012


On Sunday, October 7, 2012, I will join 45,000 runners in the Chicago Marathon.  I am dedicating my run to support, educate and find hope for Neurofibromatosis. I am hoping you will join me in making a difference in the lives of those who struggle with Neurofibromatosis (NF) through a contribution to NF Midwest.  Neurofibromatosis does not have a big name spokesperson or a big budget.  In fact, there are about 2.5 million survivors of breast cancer and over 2 million people who have NF.

I became aware of Neurofibromatosis, when I learned that a former student in my 7th grade religion class, named John is struggling with the genetic disorder.  I never realized he had Neurofibromatosis, in fact; I didn’t even know what Neurofibromatosis was.

John is 22 years old and has had Neurofibromatosis (NF) since birth.  He was expected to be blind and deaf by the age of 18.  His sight and hearing aren’t the best, but he still has function of both.  NF also causes learning disabilities, but that did not stop John from completing high school and completing HVAC training, over a 9 month span.  John has numerous café au lait (birthmark looking spots) all over his body, along with multiple tumors that affect his daily life and functionality.  He is currently seeing a doctor for a tumor on his spine, which causes him immense pain on a daily basis.

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.  It often results in terrible disfigurement, deformity, deafness, blindness, brain tumors, cancer and death.  Some tumors may be surgically removed, but they can grow back.  Neurofibromatosis can affect people of all races and genders equally and symptoms vary from person to person.  Neurofibromatosis can occur in ANY family.

Last year, before the marathon, I could feel the runner’s adrenaline; that feeling of excitement and anxiousness for the race to start.  I felt good and started strong.  When I hit mile twenty-two I started struggling.  My pace slowed and I just kept thinking, finish, make it to the finish. In retrospect, that last hour of struggling is pale in comparison to those who are struggling with Neurofibromatosis on a daily basis.  Shortly after making the decision to Run4NF, the Oak Lawn Patch did a story on John and me.  In the interview John said “I didn’t know that anyone cared about me.”  So please join me in letting John and the other 2 million people who struggle everyday with Neurofibromatosis that we care.  Together, we have the opportunity to make a difference in their lives.

Click on the links to the right for more information and the link to support NF.  If you prefer to send a check,  mail to: (Please put M. Blaha in the memo section of the check)
    NF Midwest
    473 Dunham Road, Suite 3
    St. Charles, IL 60174

With your help, the money I raise will create awareness, improve treatments and promote research to find a cure for Neurofibromatosis.   Thank you for your support!

With heartfelt thanks,
Michael & Annamarie Blaha

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