TALHASSEE, Fla. (WFLA) – Tampa Bay lawmakers, who suffer from thousands of rare diseases that affect millions of families around the world, are taking action to position Florida as the national leader in genetic medicine. State Legislature Adam Anderson is his mission to ensure that no family members face the uncertainty and heartbreak that comes with rare genetic diagnosis.
Called the “Sunshine Genetics Act,” R-Palm Harbor’s Anderson president, 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 the first committee stop, with three more committees suspended. Anderson is already looking to expand the reach of the rare disease pilot program.
“There are 10,000 of these rare diseases. Few people have practical treatments, but one of the really exciting things about the genetics of sunlight is that we can screen 600 of these conditions that are being treated practically,” Anderson said.
The bill launches a pilot program that offers genetic testing for newborns, in addition to the state’s existing screening program. It also establishes a network of clinical academic research experts, Children’s Hospitals and the University of Florida to promote research, diagnosis and treatment.
Amderson shared on your part that eight different funding components are currently being proposed. The first is a $5 million repeat funding for the FSU’s Florida Institute of Childhood Rare Diseases. They will receive funding and support from the state to continue their research efforts and continue to build pediatric clinical health centers to support CLIA-certified labs.
Another component is the former fundraising of $20 million, particularly to watch the Sunshine Genetics Pilot Program.
“The inspiration comes from my son Andrew. Unfortunately, he passed away when he was four years old. He was very rare and called what they called an ultra-rare genetic disorder Tay Sachs’ disease.
With a personal connection to this initiative, Anderson knows firsthand the heartbreaking effects of losing a child to a rare illness.
“To be very involved with these families is a bit of a ties to me, because it’s hard to interact with them personally because I understand what they’re going through. I can relate to that.
With high hopes, the law continues to gain support, Anderson says the program is a step towards ending diagnostic odysseys.
“Representative Anderson, you poured your heart and soul into this bill,” said R-Jacksonville State Assembly Representative Dean Black. “We rarely have the opportunity to change our lives and thus change the world.
“You do a lot of work on the bill, but you guarantee it’s not unfinanced. You make sure that the money is allocated to this good bill. I’m really grateful for what you’re doing to eliminate the burden on your family.”
The program hopes to host Florida State University and expand it to other universities in the state.
“My hope for this is that pilots running through FSU will be very successful next year or two, and other universities that are members of consortiums such as the University of Florida, USF, and Miami University can bring this model to the university and then coordinate and collaborate with all their research.
