The disorder is close to Desmond because of his friendship with Ethan Brown, a South Carolina native whom Desmond met and befriended through the Web site Unashamed Athletes in 2012. Brown was diagnosed with NF at 16. In March, Brown called Desmond “the big brother I never had.”
Even more than raising money, Desmond wants people to learn about the disorder. It affects one of every 3,000 people, with varying effects. It is genetic, and most often found in children or young adults. Desmond sees a disparity between the prevalence of the disorder and the amount of attention and research it receives, and he wants to help remedy that.
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