Rob Grandia knows what tuberous sclerosis complex does to a family. He has it. So do all three of his children.
On Sunday, Grandia helps bring the TSC Alliance’s Step Forward to Cure TSC® walk to the Rose Bowl Stadium’s Court of Champions — one of several walks held across the country to raise awareness and research funding for a genetic disease that causes tumors to grow in the brain, kidneys, heart and other organs.
An estimated 50,000 people in the United States live with tuberous sclerosis complex, according to the TSC Alliance, a Silver Spring, Maryland-based nonprofit founded in 1974. The disease affects roughly one in every 6,000 newborns, according to the National Organization for Rare Disorders. About 85 percent of those with TSC develop epilepsy, and an estimated 40 to 50 percent are on the autism spectrum, according to the organization.
Grandia, a Southern California resident who serves as a regional coordinator and board member for the TSC Alliance, left a career in construction to become a full-time caretaker and advocate after his children were diagnosed. His oldest daughter received her diagnosis at 18 months; his two sons followed. Genetic testing then revealed that Grandia himself had the condition.
“Being a part of the community I know the impact the research makes and it gives so much hope,” Grandia said in a profile published by the Congressionally Directed Medical Research Programs, a Department of Defense research office that funds TSC studies.
The Pasadena walk is part of the TSC Alliance’s 2026 Step Forward to Cure TSC® season, which includes events in Renton, Washington; Rockville, Maryland; Chicago; Charlotte, North Carolina; and other cities. The alliance has helped advance three FDA-approved drugs for TSC-related conditions, according to the organization’s website.
Registration begins at 10 a.m. Sunday at the Court of Champions, 1001 Rose Bowl Drive. The event runs until noon, rain or shine. Participants may also join virtually. Registration is available at give.tscalliance.org/Pasadena-CA. For volunteer information, contact Rob Grandia at grandia@verizon.net. For general inquiries, contact the TSC Alliance at 800-225-6872 or info@tscalliance.org.
Grandia, in describing his family’s path with TSC, has put it simply: “Mostly, I love my family.”
