I have two year-old twins named Maxwell & Riley. Like any parent, they are my world. About a year ago, Maxwell, was diagnosed with a rare neurological disease called SLC6A1. The disease is too rare to even have a formal name and is known only by the genetic location. We were told nothing could be done and I chose not to accept that answer. I called 200 scientists over the course of a month and found the disease can be cured via gene replacement therapy. A world renowned scientist and I are working away to create this live saving therapy and we are hoping to advance a clinical trial next year that will cure every child with this disease. I have raised $1,000,000 in 10 months to advance this therapy.
October 27, 2019