Twenty years ago Rob Grandia and his wife were a typical married couple. He worked in demolition and construction while his wife finished her teaching credentials, and they were both very excited to start a family. Rob remembers that when their daughter was born in 2001, “life seemed perfect.” However soon after, at the age of 18 months, his daughter was diagnosed with tuberous sclerosis complex (TSC), followed by his two sons a few years later. After the diagnosis of his second child, Rob underwent genetic testing which revealed that he too had TSC. In Rob’s own words, “It set my life on a very different path than I expected.” With the demand of multiple doctors’ appointments, elaborate medication schedules, and the unanticipated mental manifestations of TSC, Rob and his wife made the decision that he would leave his career in construction and become a full-time caretaker and advocate for his children. Instead of play dates and school activities, Rob focused on medications, specialists, therapies, and navigating the debilitating mental manifestations of TSC for all three of his children.
In 2014, after participating in a local Step Forward walk, Rob was approached by the Tuberous Sclerosis (TS) Alliance with the opportunity to volunteer as an Adult Regional Coordinator. Serving in this role for the last 5 years has given Rob the opportunity to support adults living with TSC all over the country as well as travel to Washington, DC each year to advocate for the Tuberous Sclerosis Complex Research Program (TSCRP). Rob maintains his commitment to his advocacy work and in 2018 became a TS Alliance board member.
Rob’s unwavering dedication to his children and to the fight against TSC also led him to serve on the TSCRP peer review panel as a consumer reviewer. The position allowed him to interact with researchers and TSC specialists and to learn their perspectives. Rob described his fellow panel members as “always engaging and informative, yet open to learn about what it means to live with tuberous sclerosis complex. I always felt like an active part of the panel whose life experiences and opinions mattered when discussing the direction of the research.” He asserts that participating was “eye-opening” and that to sit in a room with top TSC researchers and hear first-hand their interpretation of TSC “was an extremely positive experience.” Rob was and continues to be impressed with the scientific community’s commitment to understand the pathogenesis and manifestation of TSC.
Having been on this journey with his family for 17 years, Rob is grateful for the opportunities to serve the TSCRP and TSC community. He has seen incredible advances in medicine, therapies, and a commitment from all to improve the quality of life of those with TSC. Rob says, “Being a part of the community I know the impact the research makes and it gives so much hope.”
Photo taken by the photographer Paige Hinrichs
Last updated Wednesday, September 11, 2019