Kate Barbato was just 18 months old when she was diagnosed with tuberous sclerosis complex (TSC) after her parents observed her experiencing seizures. Now as an adult, Kate has become a dedicated advocate for the TSC community and has participated in numerous fundraisers and awareness events. Kate credits her parents with her first exposure to activism; Kate’s parents were staunch advocates back when the TS Alliance was still called the National Tuberous Sclerosis Association. They organized fundraisers and awareness events for the Association throughout Kate’s adolescent years, working tirelessly to raise awareness and funding for the disorder that affected their child. For a decade, the family ran one of the very first golf tournaments to benefit TSC.
In 2019, following in her parents’ footsteps, Kate started her TSC advocacy as an Auxiliary Adult Regional Coordinator and an Education Parent Mentor. She has now participated in two Marches on Capitol Hill. Kate first learned about the TSCRP through one of those marches, and she became a consumer peer reviewer for the TSCRP in 2020. She describes her experience with the TSCRP as “amazing and eye opening… to hopefully help individuals like me far in to the future! ...The entire process made me feel so proud and excited to be able to really represent and give back to the community of individuals like me who are affected by TSC every day. It was great to have a mentor to guide me through the process and reassure me that my voice meant so much to be present on the panel. Reading the proposals was a humbling experience to see how many researchers are interested and care about making a difference for our community!” Kate also remarked that it is “so touching to know that scientists, who don't know me or have experience with the spectrum of impact that we [TSC patients] are faced with, want to make life better for all of us.”
Kate has been seizure-free since she was about 5 years old; however, other manifestations of the disorder deeply impacted her family life. When planning to grow her family, Kate was diagnosed with multifocal micronodular pneumocyte hyperplasia, and her pulmonologist recommended not trying to conceive. This led to another adventure; Kate and her husband adopted a 14-month old little boy in October of 2020. Kate shares, “We are so in love with him. We couldn't imagine our lives without him, and I am excited to be able to parent him fully as I continue to monitor the impacts of TSC on my health.” Kate is a Director of Special Education for a charter school in Philadelphia.
When she is not working to make a difference for her TSC community, Kate spends as much time as she can with her family and dog, particularly at the beach or on the water. Kate enjoys cooking, reading, traveling, live music, and painting.
Last updated Wednesday, May 12, 2021