I Ran A Marathon Each Day to Raise Awareness for My Niece’s Rare Disease

By | June 2nd, 2016|Categories: Press Coverage|Tags: , , , , |

The Mighty | Al DeCesaris | June 2, 2016 In each of us is the power to make a difference. This isn’t just rhetoric. This is something I wholeheartedly believe, something I’ve observed time and again. So when the cause of Sturge-Weber Syndrome — the rare neurological disorder that afflicts my 10-year-old niece Jenna, was discovered, [...]