‘Sunshine Genetics Act' aims to advance care and research for rare diseases

Yahoo

14-03-2025

TALLAHASSEE, Fla. (WFLA) — With thousands of rare diseases affecting millions of families worldwide, one Tampa Bay lawmaker is taking action to position Florida as a national leader in genetic medicine. State Representative Adam Anderson is making it his mission to ensure no family has to face the uncertainty and heartbreak that comes with a rare genetic diagnosis.
Dubbed the 'Sunshine Genetics Act' Representative Anderson, R-Palm Harbor, wants to improve early diagnosis and treatment of rare diseases in newborns.
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After unanimous bipartisan support and positive debate, House Bill 907 passed its first committee stop, with three more committee stops to go. Anderson is already looking to expand the reach of the rare disease pilot program.
'There's as many as 10,000 of these rare diseases. Very few of them have actionable treatments, but one of the really exciting things about Sunshine Genetics is that we'll be able to screen for as many as 600 of these conditions that do have actionable treatments,' Anderson said.
The bill would launch a pilot program offering genetic testing for newborns, in addition to the state's existing screening program. It would also establish a network of clinical academic research professionals, children's hospitals, and Florida universities to advance research, diagnosis, and treatment.
Amderson shared with 8 On Your Side that there are two different funding components being proposed right now. The first is a $5 million recurring funding for the Florida Institute for Pediatric Rare Diseases at FSU. They'll receive funding and support from the state to continue their research efforts and to continue building out their pediatric clinical Health Center to support their CLIA certified lab.
The other component is a onetime funding of $20 million specifically to watch the Sunshine Genetics pilot program.
'The inspiration comes from my son Andrew, he unfortunately passed away when he was four years old. He had a very rare, what they call an ultra-rare genetic disorder, called Tay Sachs Disease and there's no treatment for that,' Anderson said.
With personal ties to this initiative, Anderson knows firsthand the heartbreaking impacts of losing a child to a rare disease.'Being involved so much with these families is a little bit of a double-edged sword for me, and I say that because it's hard for me personally to interact with them because I understand what they're going through. I can relate to it. I am one of those parents and I always will be. But that's also the motivation, that's why we do it,' Anderson said.
With high hopes the legislation will continue to garner support, Anderson says this program is a step in ending the diagnostic odyssey so many Floridians find themselves in.
'Representative Anderson, you poured your heart and soul into this bill,' said State Representative Dean Black, R-Jacksonville. 'Seldom do we get a chance to truly change lives and thereby change the world, Representative Anderson, your bill changes the world. And for that bill, I thank you.'
'You put a lot of work into the bill, but you also ensure that it's not an unfunded mandate. You make sure that money is appropriated in this good bill. I really appreciate what you are doing to eliminate the burden for families,' said Marie Paule Woodson, D-Hollywood.
The program will run through Florida State University, with the hopes to further expand it to other universities here in the state.
'My hope for this is that over the next year or two, the pilot that's run through FSU will be very successful, and then our other universities that are members of the consortium like the University of Florida, USF, University of Miami and others can then bring this model to their university and then all coordinate and collaborate on the research,' Anderson said.
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