Many of you are aware that I have been active as a volunteer with the Children’s Tumor Foundation. For the past several years I have really enjoyed assisting with the marathon program and cheering our team onto victory.

Those of you who know me best know that I don’t particularly like to run or walk long distances, especially when we’re talking about a distance of 13.1 miles. The training will be a huge commitment and to be honest with you I’m not looking forward to the aches and pain that I may feel afterward.

Well, I have a great little reason for running. Her name is Shannon and she is my niece. She was born with a disorder called NEUROFIBROMATOSIS (or just NF for short). Shannon is an amazing child. She is just TEN years old but she has already endured more medical tests and procedures than most people will face in their entire lifetime..

Looking at Shannon, you would never be able to tell that she has faced so many difficult challenges. This insidious disorder causes tumors to grow from her nerves which sometimes cause her great pain.

She had her first surgery (to remove a cancerous tumor) on 10-25-2002. She did amazingly well but she is still struggling with many more tumors including tumors on her optic nerve, one near her spine, and hundreds of small tumors in her right leg.

Unfortunately I have learned that Shannon's story is not unique: She is just one of the HUNDREDS of THOUSANDS of children born with NF. Currently there is no cure but researchers are working towards effective treatments.

I have been inspired to join the NF Marathon Team because they are dedicated to pushing NF research through fundraising so that people like Shannon don't live their lives in fear of the next tumor's growth and the next surgery.

We’ve all heard of Cancer, we’ve all heard of Diabetes, but most of us know nothing about NF. I was very surprised to learn how common it is. In fact, it affects over 1,500 Michigan families. I’ve included some NF facts and statistics below, please read them when you can.

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Neurofibromatosis (NF) is more prevalent than cystic fibrosis, hereditary muscular dystrophy, and Huntington's disease combined. It strikes one in every 3,500 births, and affects people of all races and ethnic origins throughout the world. Half of all cases occur as the result of a "spontaneous genetic mutation" in families with no history of the disorder. This means that anyone's next child could be born with NF.

NF causes tumors to form on nerves anywhere in the body, including the brain and spinal cord. It can lead to loss of vision and hearing, disfigurement, loss of limbs, skeletal defects, and various forms of cancer, including juvenile leukemia. Learning disabilities occur at a rate five to six times higher among children with NF than those in the general population. Half of all children with NF require special education. Many of these children also have speech and motor deficits, or psychosocial and behavioral problems, which require therapy. Individuals with NF have a higher incidence of stroke, structural heart defects, hypertension and other cardiovascular complications, which can affect even very young children.