I run for Nolan.
At 10 months old, Nolan Stout’s parents (Stephanie & Jared) and pediatrician noticed a large cafe-au-lait spot covering the back of his neck. Initially, this was thought to be a birthmark; however, several more spots developed in the months to come. When a sixth spot was found on his body, Nolan and his family were referred to a geneticist--a process that took over 6 months. After his initial consultation, Nolan was sent for a specialized blood test that looks for a rare disease called Neurofibromatosis.
In January 2014, after almost a year of waiting, Nolan and his family received a diagnosis; the genetic blood test confirmed he had Neurofibromatosis, Type 1 (NF1), an incurable disease caused by a spontaneous genetic mutation. Aside from symptoms like café-au-lait spots that can form internal and external tumors, scoliosis and learning disabilities, what is waiting for Nolan and his family is largely unknown.
After his diagnosis, Nolan’s parents were told not to try and make contact with other NF1 families, for fear that their discouragement at Nolan’s diagnosis would worsen. However, Stephanie and Jared would not be deterred. They already had connections to the rare disease community, as Stephanie’s great-grandmother was afflicted with scleroderma; in addition, Stephanie’s sister, Brittany Hoffmann, works for @National National Organization for Rare Disorders, Inc. (NORD) and is a runner with #Running4Rare. Determined to get involved in raising awareness for the lack of resources and research rare disease patients like Nolan face, the Stout family applied to be community partners for the 2017 TCS New York City Marathon.
Nolan’s family hopes that sharing his story can bring awareness to NF1 and the rare disease community, inspire researchers to strive for a cure, and encourage others not to fear their diagnoses.
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