FIU named to new genetic medicine consortium

The critical work of those racing to cure rare pediatric diseases got an important shot in the arm today.

Florida’s newly created Sunshine Genetics Consortium promises hope for children living with hereditary diseases and their families. It brings together FIU and research partners Nicklaus Children’s, the University of Miami, Florida State University, the University of Florida and the University of South Florida.

The Sunshine Genetics Act has established the new consortium as well as a five-year genetic newborn screening pilot program. Florida’s leading physicians and scientists will engage in collaborative research that uses personal genetic information to diagnose, treat and prevent diseases in individuals.

“Solving rare diseases requires more than funding, it demands a unified commitment from Florida’s brightest minds and most trusted health care institutions,” said Rep. Adam Anderson, who championed the legislation after his son Andrew passed away from a rare, inherited disorder of the nervous system. “We’re proving the power of partnership and setting a national example for how lives can be saved through collaboration, innovation and early detection. Through our universities, Florida will lead the future of medicine.”

As many as 10,000 rare diseases currently affect 30 million Americans.

“We at FIU are committed to not only training tomorrow’s doctors, but developing tomorrow’s cures alongside our great partners,” said FIU President Jeanette M. Nuñez at an event announcing the news. “Beyond the research, beyond the science, there's a human element that we can never lose sight of. Imagine what it’ll mean to families who are dealing with a diagnosis . . . the fact that they can turn to experts that have transformative care, that have solutions for them.”

As a member of the Sunshine Genetics Consortium, @FIU is positioned to advance cutting edge genetic and precision medicine in Florida.

Our work with the consortium will improve care for our youngest patients and give hope to them and their families.

Thank you for your bold… pic.twitter.com/iOFfFZrW6u

— Jeanette Nuñez (@FIUPresident) July 11, 2025

FIU’s presence in the consortium comes on the heels of a widely reported pioneering oncology study.

Last year, FIU’s work in the field of functional precision medicine related to pediatric cancer earned global attention. A trial to treat relapsed tumors saw improvement in 83% of the children enrolled. One family shared details of the remarkable turnaround experienced by their child.

The success resulted from cooperation between FIU Herbert Wertheim College of Medicine Professor Dr. Maggie Fader, who serves as a pediatric hematologist/oncologist at Nicklaus Children’s Hospital, and a team led by Diana Azzam, an assistant professor of environmental health sciences at FIU Robert Stempel College of Public Health and Social Work. Together they developed an approach that combines genetic testing with a new way to test hundreds of FDA-approved drugs on samples of a patient’s tumor cells.

Studies coming out of FIU’s Center for Translational Science, an advanced-research facility in Port St. Lucie, Florida, likewise hold hope for sick children.

Stephen Black heads the center and, along with scientists at other institutions, is investigating how to prevent the collateral lung damage that can occur in babies with congenital heart disease. Their goal: develop medication that works in tandem with cardiac surgery to improve outcomes.

Black, who also serves as the associate dean for research at the Wertheim College of Medicine, lauds the state for its “forward thinking” in an area of science ripe for groundbreaking, life-saving discovery.

“It really shows that Florida is leading the way, because the next generation [of treatment] is going to be personalized medicine,” he says.

The free-of-charge, opt-in genetic screening of newborns - clinical findings from which are to be shared with the child’s health care practitioner and parents - should provide an important step toward detecting potential health issues early.

“For a state to invest in this, to basically genetically test every single one of the new babies born in the state, I think it will be positive,” Black continues. “I think it’s amazing that the Florida Legislature is looking at these types of things. As a scientist, I think it’s incredibly exciting.”