Jill Woodworth

Debora Moritz is a Grassroots Advocate, Chair of TS Alliance of Arizona, Member of the Government Relations Committee, and most importantly "just Griffin's mom trying to make things better for him and few other folks along the way." From diagnosis of TSC at 5 months, vigabatrin failure, ACTH treatment success, early frustrations with lack of knowledge, Debora kept asking questions everywhere she went with Griffin. Leaving no stone unturned in terms of trying anything and everything that she could discover that may help stop the seizures, her perseverance led to Griffin's getting chosen to participate in a clinical trial of an investigational medication in to shrink the SEGAs, and as a result, a significant reduction occurred in the size of his tumors. The exceptional results of this trial led to the rapid FDA approval of Afinitor, the first drug designated to specifically treat SEGAs associated with tuberous sclerosis complex (TSC) in 2010. We discuss Debora's government advocacy in the evolution of the Ma