Florida launches groundbreaking newborn genetic screening program as FSU institute leads statewide effort to detect rare diseases earlier
Florida – A new statewide effort in Florida is aiming to change the way rare genetic diseases are discovered in children. This summer, families of newborns will have the opportunity to participate in Sunshine Genetics, a new genetic screening initiative designed to identify hundreds of rare conditions before symptoms appear.
At the center of the program is the Florida Institute for Pediatric Rare Diseases (Florida IPRD) at Florida State University, which was selected through the Sunshine Genetics Act to lead and coordinate the statewide initiative.
The goal of the program is to help families avoid what doctors and researchers often call the “diagnostic odyssey” — a long and difficult journey where children and families spend years searching for answers after symptoms begin. By using genomic screening shortly after birth, doctors hope to identify conditions earlier, allowing treatment and support to begin before serious and sometimes irreversible damage occurs.
For Rep. Adam Anderson, an FSU alumnus and Republican from Palm Harbor, the program represents a deeply personal mission. Anderson helped champion the legislation after losing his son Andrew to Tay-Sachs disease, a rare genetic disorder.
“My hope is that families will get the answers that they need and that babies born today won’t have to live that same nightmare of that diagnostic odyssey that I did and that so many families around the country do every day,” Anderson said.
The Sunshine Genetics Program was created through legislation signed into law in 2025. The law established a statewide framework for genomic newborn screening and placed Florida IPRD within FSU’s College of Medicine in charge of administering the pilot program.
Florida State University President Richard McCullough said the initiative brings together experts from across the state with a shared goal of improving outcomes for children with rare diseases.
“Florida State University is bringing together world-class researchers, clinicians and partners from across the state to help give children with rare genetic diseases the best possible start in life,” FSU President Richard McCullough said. “By leading the Sunshine Genetics Pilot Program, FSU is helping transform groundbreaking research into earlier diagnoses, more timely care and greater hope for families across Florida.”
Anderson said FSU was a natural choice because of the university’s existing expertise in genetics, medicine and rare disease research.
“We want Florida State and the Florida Institute for Pediatric Rare Diseases to be the destination for this type of work and this type of medical care,” he said. “The sophistication was already there, the experts were there, the recruiting was going really well to bring in the right professionals that had the ability and the skill set to lead a program like this that had really never been done in the country before.
“FSU had the pioneers. We just had to put them to work.”
Building a statewide genetic screening network
Florida IPRD will serve as the scientific and operational center for Sunshine Genetics. The institute will manage the program, coordinate participating hospitals and medical providers, lead the Sunshine Genetics Consortium and work with researchers, healthcare systems, industry partners and patient advocacy groups.
Dr. Pradeep Bhide, the Jim and Betty Ann Rodgers Eminent Scholar Chair of Developmental Neuroscience, director of Florida IPRD and director of the Center for Brain Repair, said the program is about much more than simply collecting genetic information.
“The program’s goal is not merely to generate genomic data but to ensure that clinically meaningful information can be translated into informed medical decision making,” Bhide said.
Dr. David H. Ledbetter, senior associate director for precision medicine at Florida IPRD and chair of the Sunshine Genetics Steering Committee, said families are an important part of the program’s development.
“This is a state-initiated project to determine if genomic newborn sequencing can identify children with treatable rare diseases earlier in life, which could greatly improve their long-term health and well-being,” Ledbetter said. “We have substantial input from parents of children with rare genetic diseases guiding our patient education, consent and clinical follow-up protocols.”
Sunshine Genetics is one of several major programs operated through Florida IPRD. The institute also manages a diagnostic laboratory, supports rare disease research, develops education opportunities in genetic counseling, operates a viral vector and genome editing core and is expanding specialized pediatric care through the FSU Health Precision Pediatrics Clinic.
The state has continued investing in the initiative. The Florida Legislature recently included funding for both Florida IPRD and the Sunshine Genetics Program in Florida State University’s 2026-27 operating budget.
For families who choose to participate, the process is designed to be simple. The program uses the same blood spot sample already collected through Florida’s traditional newborn screening program, meaning babies will not need an additional blood draw.
After parents provide consent, the sample will undergo genomic sequencing to search for disease-causing variants in about 900 genes linked to treatable childhood disorders.
If testing identifies a possible genetic condition, Florida IPRD will help coordinate the next steps. Those steps may include confirmatory testing, genetic counseling, communication with pediatricians and connections to specialized medical care.
Ledbetter said Florida IPRD will also provide training for participating hospitals and help manage patient education, recruitment, results communication and long-term follow-up as the program grows.
“Our goal is to help transform genomic information into meaningful support for children and families,” Bhide said.
Earlier answers could change children’s futures
Florida’s current newborn screening system tests for 63 conditions. Sunshine Genetics will greatly expand that number by examining hundreds of additional genetic disorders.
“The Sunshine Genetics panel is approaching 900 conditions,” Anderson said. “There is nowhere else in the country that has something this robust that’s backed by a state. So wildly different. This truly is becoming the model for the nation.”
Doctors and researchers say timing is especially important for diseases affecting the brain and nervous system.
“There’s a saying in those groups that time is brain,” Anderson said. “Every day that goes by, every hour, every minute actually, that goes by when you have a genetic condition that’s affecting your brain matter, you’re losing brain matter.”
One condition that highlights the importance of early detection is spinal muscular atrophy, also known as SMA. The inherited disorder can cause severe muscle weakness, breathing difficulties and, in some cases, death during early childhood if it is not treated.
“Identifying SMA shortly after birth through genomic newborn screening can allow treatment within weeks of life, often preserving motor function and dramatically improving long-term outcomes,” Bhide said. “Diagnosis months or years later may mean that significant neurological injury has already occurred, limiting the benefits of treatment.”
Anderson said some genetic diseases may require advanced therapies, including gene treatments, while others may have simpler solutions if discovered early.
He pointed to Tango2 deficiency disorder, a rare condition that may respond to vitamin B supplements.
“Kids that are trying this are using Flintstones vitamins,” Anderson said. “That’s how simple this is.
“The sooner you have that answer, the sooner you can get treatment,” he said. “If you’re able to administer one of these treatments before the symptoms present themselves, before that physical damage occurs, you can prevent them from ever happening.”
Florida hopes to become a national example
Florida’s approach is different from many genetic screening projects across the country. Instead of beginning as a small academic project and later seeking government support, the state created the framework through legislation and brought together universities, hospitals, laboratories and advocacy organizations from the beginning.
“Florida is not simply testing genomes,” Bhide said. “It is building the clinical, digital and workforce infrastructure needed to translate genomic information into better health outcomes for children and families statewide.”
The pilot program is expected to screen about 100,000 newborns. Researchers hope the results will help determine whether genomic sequencing should eventually become part of routine newborn care for every baby born in Florida.
“If the project produces the data we expect, Florida will be the first state in the U.S. to implement genomic newborn sequencing as a universal screen for all babies born in Florida,” Ledbetter said. “I’m thrilled and honored to be part of this transformative health initiative.”
The effort has gained attention beyond state borders. Anderson said healthcare leaders in other countries are watching Florida’s work closely.
“Everyone in England in the genomic space is paying attention to Florida and Florida State and what’s going on here in our state and at FSU,” Anderson said. “They’re amazed by it.”
The program connects academic medical centers, hospitals, laboratories, industry partners and patient organizations throughout Florida, creating a network designed to support families from diagnosis through treatment.
Measuring success in lives changed
Supporters say the success of Sunshine Genetics will not only be measured by the number of screenings completed but by the children whose lives improve because of earlier answers.
Five years from now, Anderson said he hopes the program will show that children are receiving faster treatment, avoiding unnecessary suffering and reducing years of medical uncertainty.
“We’ll know this program succeeded because there will be babies that have positive screening results and they’ll be able to get rapid treatment and early intervention,” he said.
He also believes earlier diagnosis could reduce healthcare costs by avoiding years of repeated appointments, hospital visits and testing.
“One test that’s $1,000 or less and you get the answer right away,” Anderson said. “You save all of those years, all of those extra trips to doctors and hospitals.”
For Bhide, the true measure of success is the impact on families.
“Success would mean that children with rare genetic diseases across Florida are being diagnosed earlier, receiving more timely and effective care and experiencing better health outcomes because of access to advanced genomic technologies,” he said. “Most importantly, success would be measured by the children and families whose lives are improved through earlier answers, better treatment options and greater hope for the future.”
The long-term vision is to expand the program beyond the pilot phase and make genomic newborn screening available to all Florida families.
“This is a pilot, a limited-scale pilot with 100,000 babies,” Anderson said. “The goal is to turn this into universal newborn screening.”
With Florida State University leading the effort, state officials and researchers hope Sunshine Genetics will become a blueprint for how early genetic detection can transform children’s healthcare across the country.
