Rep. Adam Anderson is touring the state hyping the Sunshine Genetics Act at premier medical colleges and research institutions.
On his third leg of the tour, Anderson is meeting with officials at the University of South Florida, which will be a Sunshine Genetics partner.
Anderson ran a bill (HB 907) this year, which Gov. Ron DeSantis signed in June, establishing the Sunshine Genetics Act. The Act greenlights pediatric rare disease research expansion and positions Florida as a national leader. It also established the Sunshine Genetics Pilot Program with $3 million in initial funding, laying the foundation for a new $100 billion genomic medicine industry in the state.
USF is investing heavily in genomic medicine through both educational programs (MPH/Ph.D., genetic counseling) and core research infrastructure, emphasizing interdisciplinary collaborations and public health impact. The USF College of Public Health hosts the first and only accredited genetic counseling graduate program in Florida. Anderson’s Sunshine Genetics Act is expected to boost the university’s research and partnership opportunities.
The partnership was a natural fit in other ways too. USF established the Morsani College of Medicine in the late 1960s and has since grown into a leading institution, now nationally recognized for innovation in medical education, research and primary care. It is the top-ranked medical school in Florida and the only school in Florida to receive a Tier 1 medical school ranking by U.S. News & World Report.
The Sunshine Genetics Act establishes a five-year genetic sequencing pilot program for newborns and creates the Sunshine Genetics Consortium, uniting Florida’s top researchers, clinicians and biotech innovators.
The law took effect July 1. The pilot program allows families to opt in to have their child’s full genetic code sequenced for free, with the goal of identifying potentially serious, but treatable, conditions early. Early treatment can be life-saving, and can lead to better health outcomes, fewer hospital visits and higher quality of life.
“For too many families, a rare disease diagnosis is a journey of heartbreak and uncertainty,” said Anderson, whose son Andrew passed away from Tay-Sachs disease. “The Sunshine Genetics Act is a promise to those families — a promise of hope, early detection, and a future where no child’s life is cut short by a rare disease. Florida is leading the way, and this historic investment will change lives for generations.”
Tay-Sachs disease is an ultrarare fatal genetic disorder with only 16 cases annually nationwide. There are more than 7,000 known rare diseases that affect some 350 million people worldwide, according to Anderson’s Office.
USF is celebrating the partnership to enhance research and treatment.
“The University of South Florida is proud to be a partner in this important effort to develop solutions that will transform the lives of children and families,” USF President Rhea Law said. “The Sunshine Genetics Act that Representative Anderson championed, and our state leaders have advanced, offers new opportunities to decode the mysteries of rare genetic disorders, bringing hope to thousands of families in Florida and beyond.”
“Thanks to the Sunshine Genetics Act, Florida will be at the forefront of research and development of new tools to save babies’ lives and improve their health,” added Dr. Charles J. Lockwood, executive vice president of USF Health and dean of the USF Health Morsani College of Medicine.
“USF Health is honored to participate in the Sunshine Genetics Consortium, and we look forward to lending our considerable resources — from genetic counseling and education programs to our extensive research infrastructure — to collaborative efforts that will advance the science in an arena so important to the future of Florida.”
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.
Last year, Anderson successfully ushered through a bill (SB 1582) that created a grant program to fund scientific and clinical research on rare diseases.
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