NFE Mom
My blogs
| Introduction | My daughter Jane is 17 years old. She was diagnosed with neurofibromatosis, type 1 (NF1) at age 6 months. NF is a genetic condition which can lead to multiple nerve tumors. The primary manifestation of Jane's NF is a large plexiform neurofibroma on the right side of her face, jaw, and neck. Jane is currently participating in her third clinical trial with an experimental drug in the hopes of controlling her tumor. Jane is an otherwise heathy 11th grader! She enjoys spending time with her big brother and sister and her friends. I have been a runner all my life, but joined the NF Endurance team (part of the Children's Tumor Foundation) about a year after Jane's diagnosis. Since then I have run twenty-six half- and twenty full marathons, and in doing so have raised over $290,000 for the Children's Tumor Foundation and other NF charities. |
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