Florida Lawmaker's Foundation Raises Funds for Rare Pediatric Diseases in Son's Memory

When Rep. Adam Anderson and his wife, Brianne, watched their son Drew's nervous system fail — the slow, devastating toll of Tay-Sachs disease — they made a promise. In 2018, a year before Drew died, they launched the A.J. Anderson Foundation to ensure other Florida families facing rare pediatric diseases would not face them alone.

This week, that promise becomes a sold-out series of events at Innisbrook Resort in Palm Harbor. A rare disease symposium runs Wednesday from 10 a.m. to 4 p.m., followed by the A.J. Anderson Dinner for a Cause — including a silent auction — beginning at 6 p.m. The A.J. Anderson Golf Tournament tees off Thursday at 8 a.m. on the resort's South Course. All proceeds will fund the foundation's charitable mission, including the Florida Institute for Pediatric Rare Diseases and the Sunshine Genetics Newborn Screening Program.

The scale of the problem those dollars address is staggering. More than 10,000 known rare diseases affect more than 30 million Americans, with 80 percent of them genetic in origin, public health data shows. The average time to diagnose a child with a rare disease exceeds six years — years in which families cycle through wrong answers and mounting medical debt. The cost of rare diseases in the U.S. reached one trillion dollars in 2019, according to the Every Life Foundation.

Anderson has translated personal loss into legislative action. His Sunshine Genetics Act codified the Florida Institute for Pediatric Rare Diseases as a statewide resource within FSU's College of Medicine and established a five-year genetic sequencing pilot program that united Florida researchers, clinicians and biotech innovators. The practical result: Florida's newborn screening program expanded from screening 60 conditions to as many as 900.

The foundation's partnership with FSU's Florida Institute for Pediatric Rare Diseases anchors this week's events. Sponsors include FPL, Tampa General Hospital, Nemours Children's Health, Quest Diagnostics, CVS Health, AdventHealth, USF Health and others.

Drew Anderson was diagnosed with Tay-Sachs in 2016 and died in 2019. The foundation carrying his initials — A.J. — is the family's answer to a question no parent should have to face: what do you do when the medicine doesn't exist yet?

For Treasure Coast families whose newborns are screened at birth — a routine step in every Florida delivery — that expanded list of 900 conditions is the direct inheritance of Drew Anderson's short life. Parents with questions about Florida's newborn screening program can contact the Florida Department of Health or FSU's Florida Institute for Pediatric Rare Diseases at its College of Medicine.

This article was generated with AI assistance using publicly available information. It was reviewed and approved by a human editor before publication. TC Sentinel uses AI writing tools in accordance with FTC guidelines.