Thank you for taking the time to read about Maria and Neurofibromatosis (NF).

Our daughter, Maria, who is now 3, was diagnosed with NF1 when she was about 1 year old. Her pediatrician had suspected it since she was about 3 months old due to a number of cafe' au lait spots, minor heart defects and some issues with her vision.

Like us, you may not have been familiar with NF. It is a complex disorder that can affect almost every organ system, causing a predisposition for benign and/or malignant tumors to develop on nerves in the brain and throughout the body. Although many people with NF are asymptomatic or have only been mildly affected by this disease, NF is a progressive disorder that may lead to problems including: learning disabilities, brain tumors, vision loss, seizures, paralysis, headaches, nerve tumors, weakness, pain, loss of hearing and balance, scoliosis and bone deformities, heart valve defects, abnormalities of the arteries, and pigmentary abnormalities, particularly café-au-lait spots.

Currently, there is no cure for NF and treatments typically consist of treating the various symptoms.

Since Maria's diagnosis, she has developed a tumor near her spine and one on her rib cage. She has had a number of tests and screenings and we are grateful that she has been relatively unaffected by NF...but we are always mindful of those who have been severely impacted and of the progressive nature of this disease. For this reason, we are working with The Children's Tumor Foundation, which is dedicated to solving the NF puzzle and finding a cure ....through research.

Check out this NF Marathon Team link for more info on Neurofibromatosis and current research: go to the tab "Team Research Dollars at Work." CLICK HERE.

Maria is a happy, smart, carefree and healthy little girl and we are "going the distance" so she grows up to be a happy, smart, carefree and HEALTHY woman.

We are led and inspired by Maria's godmother, Aunt Robin, who decided to run her first marathon in October 2007 for Maria. We are now "Maria's Marathoners" and will also be participating in the Green Bay Half-Marathon and 5K in May.

You probably know the Zambian proverb, “When you run alone, you run fast. When you run together, you run far.” Well, we hope that's us!

We are also inspired by the tremendous advancements in research relating to the treatment of NF learning disabilities and the suppression of tumor growth (partnering with the cancer research community).

Please give...each and every contribution gets us closer to a cure and is greatly appreciated by all who are impacted by NF.

You may learn more about the Children's Tumor Foundation and their support of vital research, please CLICK HERE.

All donations are tax-deductible and will be gratefully acknowledged by the Children's Tumor Foundation.

Thanks for your support, prayers and donations!

--Nic, Kristin, Regina, Joseph and Maria