TSC Talks! An Invitation to Inspiration with Devoted Dad, Husband & TSC Advocate Rob Grandia

Rob Grandia is an adult with TSC and father of 3 children affected by TSC. In this episode, he gives an inside look at not only receiving a diagnosis of TSC in his children but also finding out as an adult that he also is affected. We discuss the various manifestations experienced by his children throughout these last 18 years, and how the family was able to find adequate treatment locally. From partial complex seizures as the diagnosing symptom in his oldest daughter to reducing seizures from 80-90 per day to 1-2 per week on an modified Atkins diet for his son, this family has seen a lot. From the early days where seizure management was the primary goal to current day dealing with behavior challenges, what is evident is the overriding commitment and devotion of Rob and Shannon to providing stability, humor and mutual support for each other and their children. Steadfastly devoted to each other as well as the cause of TSC awareness, research and finding a cure, they have found ways to cope, find joy & humor and help others throughout this journey. Rob's work as a board member and regional coordinator with the TS Alliance has provided much purpose and passion as he makes it a priority to be available to help as many other Dads, individuals and families as possible. In his words, "I am a husband and father to 3 amazing kids. Tuberous Sclerosis plays a huge role in my life and I am advocate for research and development to find a cure. Mostly, I love my family." I personally am incredibly inspired by Rob, Shannon and their entire family as they continue to rise up to each new challenge, despite facing grief and loss, push forward and hope that they can use their lived expertise to provide hope & inspiration daily to as many people as possible.

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