TSC Talks; "Vocatus atque non vocatus, Deus aderit.” with Grassroots TSC Advocate & Griffin's Mom, Debora Moritz

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 March on Capitol Hill, growing from a handful of people to well over 100 volunteers last year and getting 200 Democratic & Republican Representatives signing on to support TSCRP funding. We hit some of the highlights from successes over the years, working with other volunteers, making personal connections and continually asking the tough questions that demand better answers are part of Debora's methods of grassroots advocacy. In her own words, " We cannot wait for others to keep the momentum going for us; we must do so together. "We can change lives. And we can get to a place where no one has to suffer from the devastating effects of tuberous sclerosis complex, but it takes action." (music credit: https://www.purple-planet.com/)

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