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Aug 31, 2024
Florida Trend
Andrew Anderson was a perfectly normal newborn, his parents thought, just like his two older sisters.
It wasn’t until he was 6 months old that they sensed something was wrong with their only son, who wasn’t hitting his milestones. After a year of misdiagnoses and genetic testing, they uncovered the cause: Andrew had Tay-Sachs disease, a rare inherited disorder that damages nerve cells in the brain and spinal cord. It has no cure. When he was 4 years old, Andrew passed away. The end of his life marked the start of a legacy — one furthering research into rare pediatric diseases in Florida.
“It led us where we are,” says state Rep. Adam Anderson, Andrew’s father. “There’s no way I’d be working on this stuff if I hadn’t lived that experience. It’s not only become a passion; it’s literally my calling in life.” Last year, Anderson, a Republican from Palm Harbor, successfully pushed for $1million in state funding to launch the Florida State University Institute for Pediatric Rare Diseases. The institute, which opened earlier this year and is the first of its kind in the state, is dedicated to researching and treating rare childhood diseases.
