Janelle Irwin Taylor
Rep. Adam Anderson is announcing new legislation that would seek to position Florida as a national leader in genetics, gene therapy and precision medicine.
He plans to unveil the proposed legislation, entitled the “Sunshine Genetics Act,” in detail at the Florida State University (FSU) Institute for Pediatric Rare Diseases’ Rare Disease Day Symposium.
Broadly, the bill would establish a genetic testing newborn screening program to be administered by the FSU pediatric rare diseases unit. It would also create a collaborative network among top state universities to drive research, diagnosis and treatment of rare genetic disorders.
The issue of rare diseases is one Anderson often champions. His son, Andrew, suffered from Tay-Sachs disease, an ultrarare fatal genetic disorder with only 16 cases annually nationwide.
“This legislation is deeply personal to me,” Anderson said. “After losing my son Andrew to Tay-Sachs disease at just four years old, I made it my mission to ensure no family has to face the uncertainty and heartbreak that comes with a rare genetic diagnosis. With this bill, we are taking a major step forward in making Florida a hub for groundbreaking medical advancements that will save lives. The future of medicine is coming to Florida.”
The FSU pediatric rare diseases institute opened last February after Anderson advocated for it and secured an initial $1 million grant. He later helped secure another $5 million in state funding, announced at the institute’s first symposium. The institute is part of FSU Health and works to help kids with rare diseases through research, education and clinical care.
There are more than 7,000 known rare diseases that affect some 350 million people worldwide, according to Anderson’s Office. His bill seeks to expand testing for such diseases, while accelerating medical research into their treatment and bringing hope to those who suffer and their families.
“Florida is on the cutting edge of genetic and precision medicine,” Anderson said. “By investing in newborn screening and university-led research, we are not just advancing science — we are changing lives.”
Last year, Anderson successfully ushered through a bill (SB 1582) that created a grant program to fund scientific and clinical research on rare diseases.
The program facilitates scientific and clinical research grants to study pediatric rare diseases and calls for collaboration among universities, research institutes and community practitioners to ensure a comprehensive approach to advancing detection and treatment of rare diseases in children.
Since his son’s death, Anderson and his family have been active in advancing research in rare diseases through the Cure Tay Sachs Foundation and their AJ Anderson Foundation. Anderson previously worked with former House Speaker Chris Sprowls to create Tay Sachs Awareness Day in Florida on Aug. 10, Andrew’s birthday.
