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Conference brings together researchers, clinicians, industry leaders and families to discuss advances in genomic screening and gene therapy

For families affected by rare diseases, unexplained developmental delays or medical symptoms often mark the beginning of a “diagnostic odyssey,” a frustrating search for answers and treatment options.

The longer the search continues, the greater the emotional toll on families. Without a diagnosis, effective treatment may be delayed. Millions of families worldwide face this challenge each year.

The Florida Institute for Pediatric Rare Disease (Florida IPRD) at the Florida State University College of Medicine is working to shorten that journey.

Through a newborn whole-genome sequencing pilot program, family counseling, care management, rare disease research initiatives and professional training, FSU faculty and scientists are helping families better care for their loved ones with a rare disease.

With support from the state legislature, Florida IPRD is helping to expand access to genomic medicine and accelerate research into rare diseases to transform lives. The institute is partnering with the A.J. Anderson Foundation on its shared mission to improve pediatric rare disease healthcare.

Transforming personal tragedy into a movement to help Florida families

Rep. Adam Anderson (R-Palm Harbor) and his wife, Brianne, started the A.J. Anderson Foundation in 2018 after their son Andrew was diagnosed with Tay-Sachs disease, a rare genetic disorder that destroys nerve cells in the brain and spinal cord. Their own diagnostic odyssey followed as they sought care for their son. The experience prompted them to look for a way to support other families seeking rare disease treatment.

The foundation’s goals are to advocate for improved research and treatment to put an end to pediatric rare diseases and to increase access to genetic testing.

“The partnership between the A.J. Anderson Foundation and the Florida Institute for Pediatric Rare Diseases demonstrates what can be accomplished when advocacy, science, medicine, industry and public policy come together to accelerate diagnosis, expand treatment opportunities, and improve outcomes for children with rare diseases,” said Pradeep Bhide, director of Florida IPRD. “Representative Anderson and Brianne Anderson have been extraordinary champions for children with rare diseases, and their leadership has helped create programs such as ours that are positioning Florida as a national leader in genomic medicine and early diagnosis.”

Rare Disease Conference: Bringing together research and industry leaders

On Wednesday, the A.J. Anderson Foundation and Florida IPRD cohosted a rare disease conference in Pinellas County, bringing together researchers, healthcare professionals, industry partners and families to learn about ongoing work and provide a look into the future of treatment.

Dr. David Bick, the principal clinician for the Newborn Genomes Programme at Genomics England, delivered the keynote address. Attendees also heard from two panels, one focused on genomic newborn screening and the other focused on advances in gene therapy. Panelists from GeneDx, Nest Genomics, Alexion Pharmaceuticals and Amazon Web Services shared their insight in the first session. Panelists from UMass Chan Medical School, Florida IPRD and the University of Florida spoke during the second session.

Together, the panels represented two major, complementary goals: Diagnosing children with rare disease at birth and offering them an opportunity for early intervention and rapid treatment.

“The promise that these gene and cell therapies offer is that if you can detect a condition at birth, before symptoms occur, you can prevent those symptoms from ever showing themselves, and that child can live a perfectly healthy life,” Anderson said.

The Sunshine Genetics Program

Genomics medicine in Florida received a major boost last year with the passage of the Sunshine Genetics Act. With the support of the state legislature and Gov. Ron DeSantis, the act established the Florida Institute for Pediatric Rare Diseases and provided additional funding for research and a genetic screening pilot program.

For the Floridians who now have the opportunity to screen their children for a rare disease and for the millions more people who can be helped through research breakthroughs, the work is urgent and crucial.

“Rare diseases test our healthcare systems, our scientific capabilities and our collective compassion. At the same time, they inspire determination, collaboration and hope,” said Dr. Alma Littles, dean of the FSU College of Medicine. “At Florida State University, we are proud to support the Florida Institute for Pediatric Rare Diseases and the Sunshine Genetics initiative as part of our broader commitment to expanding precision medicine, expanding access to care, and bringing together clinicians, scientists, educators, policymakers, industry leaders and patient advocates around a shared mission.”

Visit the Florida IPRD website for more information about the institute. Visit the A.J. Anderson Foundation website to learn more about the organization’s mission.

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The National Academy of Inventors, or NAI, has named five Florida State University faculty members as 2026 NAI Senior Members.

NAI Senior Members are active faculty, scientists and administrators with success in patents, licensing and commercialization and have produced technologies that have had significant impact on the welfare of society. There are more than 945 Senior Members holding over 11,000 U.S. patents.

This year’s class of NAI Senior Members is the largest to date, hailing from 82 NAI Member Institutions across the globe and collectively holding over 2,000 U.S. patents. FSU’s 2026 inductees are Pradeep Bhide, Ava Bienkiewicz, Christian Bleiholder, Yan-Yan Hu and Ulf Trociewitz. The university now counts 10 Senior Members among its faculty.

“This recognition from the National Academy of Inventors is a testament to the inventiveness and impact of these faculty members,” said Vice President for Research Stacey S. Patterson. “Their research is making positive change in the world, and I’m proud to celebrate their achievements.”

The 2026 class of Senior Members will be honored during the Senior Member Induction Ceremony at NAI’s 15th Annual Conference June 1-4 in Los Angeles.

Pradeep Bhide

Bhide is a professor in the College of Medicine and director of the Florida Institute for Pediatric Rare Diseases. As the Jim and Betty Ann Rodgers Eminent Scholar Chair of Developmental Neuroscience, he directs interdisciplinary teams of physicians, scientists and genetic counselors who leverage gene therapy and precision medicine approaches to improve outcomes for children affected by rare diseases. His work has been supported by the National Institutes of Health, the Department of Defense and private foundations, and his comprehensive approach to developing innovative diagnostic and therapeutic technologies has earned national recognition.

In 2024, Bhide helped launch the Sunshine Genetics Pilot Program, which allows Florida families to opt in to no-cost whole genome sequencing for newborns to identify serious but treatable conditions before symptoms appear. As director of the Institute for Pediatric Rare Diseases, Bhide remains committed to advancing translational research, expanding public outreach and training the next generation of healthcare professionals dedicated to combatting pediatric rare diseases.

Ava Bienkiewicz

Bienkiewicz is an associate professor in the College of Medicine, where she integrates research and teaching in the doctoral, M.D., and physician assistant programs in the Department of Biomedical Sciences. Her research focuses on protein structure, stability and biomolecular interactions in the context of human disease and therapeutic intervention.

Bienkiewicz’s work centers on intrinsically disordered proteins and their roles in neurodegenerative and vascular injury-related conditions, including Alzheimer’s disease, stroke and traumatic brain injury. By investigating protein misfolding and structure-function relationships, her research seeks to uncover molecular mechanisms that drive neuronal degeneration and survival.

She leads collaborative research efforts that translate fundamental molecular discoveries into medically relevant applications. Her work contributes to the development of new therapeutic strategies aimed at improving outcomes for patients affected by neurodegenerative and cerebrovascular diseases.

Christian Bleiholder

Bleiholder is a professor in the Department of Chemistry and Biochemistry, where he leads an interdisciplinary laboratory that integrates physical chemistry, analytical chemistry and biophysics to address longstanding challenges in protein structure analysis.

His research centers on advancing analytical chemistry methods, such as tandem‑trapped ion mobility spectrometry, or tandem‑TIMS, a powerful tool that reveals how proteins fold, assemble and change shape. His lab combines experimental and computational approaches to connect protein structure across multiple scales, opening new windows into complex systems such as monoclonal antibodies and protein assemblies linked to neurodegenerative disease and biotherapeutics.

Bleiholder has received multiple honors for his work, including a National Science Foundation CAREER Award, a Postdoctoral Research Award from the American Chemical Society, and a fellowship from the Alexander von Humboldt Foundation.

Yan-Yan Hu

Yan‑Yan Hu is a professor in the Department of Chemistry and Biochemistry and a faculty affiliate of the National High Magnetic Field Laboratory. Her work sits at the crossroads of chemistry, materials science and the MagLab’s world‑class magnetic resonance capabilities.

Her research is focused on advancing solid‑state NMR and MRI techniques to reveal how energy and biomaterials function at the atomic level. Her discoveries have reshaped understanding of ion transport and structure in solid‑state batteries and other energy‑storage materials, with results published in leading journals such as Nature Materials, Science Advances and Angewandte Chemie.

Hu has earned major honors including a National Science Foundation CAREER Award and the Marion Milligan Mason Award from the American Association for the Advancement of Science. She has also served in editorial roles for journals such as Materials Today Chemistry, Journal of Magnetic Resonance, and Chemistry of Materials.

Ulf Trociewitz

Trociewitz is a research faculty member at the National High Magnetic Field Laboratory, where he serves as senior personnel and deputy in magnet technology within the Applied Superconductivity Center. His research focuses on the development of high-temperature superconducting magnets and materials designed for ultra-high magnetic fields and exceptional homogeneity, particularly for nuclear magnetic resonance applications.

He holds six patents and has authored more than 80 peer-reviewed publications in international journals, reflecting his significant contributions to superconducting magnet innovation. His work supports the advancement of next-generation research instrumentation critical to scientific discovery in chemistry, biology and materials science.

He leads a $1.2 million, four-year research project funded by the National Institute of General Medical Sciences to develop ultra-high-field NMR magnets using multifilament high-temperature superconductors. Through his research, Trociewitz continues to push the technological boundaries of magnet design, strengthening the nation’s leadership in advanced scientific infrastructure.

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The Florida Institute for Pediatric Rare Diseases and the Florida State University College of Medicine will recognize Rare Disease Day this week with a symposium and panel discussion, featuring experts in genomics and its clinical application.

“We are committed to fostering collaboration and innovation to improve the lives of those affected by rare diseases through groundbreaking research, education and strong partnerships,” said Pradeep Bhide, director of the Florida Institute for Pediatric Rare Diseases, or IPRD. “This gathering provides a vital platform for advancing the understanding, diagnosis and treatment of rare diseases.”

Dr. Eric Green will deliver the keynote address following comments from FSU President Richard McCullough, College of Medicine Dean Dr. Alma Littles and Florida Rep. Adam Anderson. A physician-scientist, Green spent more than three decades with the National Human Genome Research Institute at the National Institutes of Health, serving as its director from 2009-2025. He recently joined Illumina as its chief medical officer, where he remains committed to advancing genomics to improve the human condition.

Sarah South, executive scientific director at Quest Diagnostics, will join Green, McCullough and Anderson for a roundtable discussion, which will be moderated by IPRD’s Associate Director for Precision Medicine, David Ledbetter. Poster presentations of ongoing IPRD-funded research and a reception will follow.

Observed annually on the last day in February, Rare Disease Day is a global movement raising awareness for the estimated 300 million people diagnosed with one of more than 6,000 identified rare diseases. Its goal is to ensure equitable access to diagnosis, treatment, health care and social support for those affected.

This marks the third Rare Disease Day event at the College of Medicine since Florida Gov. Ron DeSantis signed the July 2023 State budget appropriation, championed by Anderson, establishing IPRD.

The event, which will be streamed live, will be held:

Friday, Feb. 28

10 A.M. – 12 P.M.

Durell Peaden Auditorium

FSU College of Medicine

John Thrasher Building

1115 W. Call St.

Tallahassee, Florida

###

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With Rare Disease Day approaching on Feb. 28, the Florida Institute for Pediatric Rare Diseases at the Florida State University College of Medicine is investing in key areas to fight these adverse conditions.

The groundbreaking Sunshine Genetics Act, signed into law in July 2025, establishes a five-year voluntary genetic sequencing pilot program for newborns and creates the Sunshine Genetics Consortium that unites Florida’s top researchers, clinicians and biotech innovators. The $3 million investment allows families to opt in to having their baby’s full genetic code sequenced at no cost — positioning FSU and the State of Florida as leaders of pediatric genomic medicine.

The Florida Institute for Pediatric Rare Diseases will host a Rare Disease Day Symposium at the FSU College of Medicine on Friday, Feb. 27, to share its mission and upcoming projects as a leader in a critical area of research.

The numbers are eye-opening: There are more than 7,000 pediatric rare diseases affecting approximately 30 million people in the United States, including 15 million children. The Sunshine Genetics Act was championed by Rep. Adam Anderson (R-Palm Harbor), whose son Andrew passed away from Tay-Sachs disease at just 4 years old and inspired his push to create meaningful legislation.

Pradeep Bhide, director of the Florida Institute for Pediatric Rare Diseases, views Rare Disease Day as a reminder of research’s potential to improve the quality of life for children and families.

“As we observe Rare Disease Day, the message is one of real momentum and hope,” Bhide said. “Genomics, combined with emerging gene-based therapies and coordinated statewide efforts, offers the strongest promise for transforming outcomes for children living with rare diseases. Our mission remains clear: to combine scientific rigor with compassionate care and to transform what is possible for children living with rare diseases.”

Media interested in learning how FSU is working to combat pediatric rare diseases may reach out to Pradeep Bhide at pradeep.bhide@med.fsu.edu.

Pradeep Bhide, Florida Institute for Pediatric Rare Diseases Director, College of Medicine

The Sunshine Genetics Act helps position FSU and the State of Florida at the forefront of pediatric genomic medicine. Can you outline the importance of genome testing and research as it relates to diagnosing pediatric rare diseases?

Families affected by rare diseases often face years of uncertainty, but whole genome sequencing dramatically shortens this diagnostic odyssey by evaluating nearly all of a child’s genetic information at once. This approach increases diagnostic accuracy, identifies actionable findings earlier and enables more timely and targeted care. A precise genomic diagnosis is often the critical first step. It guides medical management, connects families with appropriate specialists and opens access to national foundations and clinical trials. Each diagnosis also strengthens the scientific foundation needed to develop new therapies and, ultimately, preventive strategies.

At Florida State University, the Florida Institute for Pediatric Rare Diseases and the Sunshine Genetics Pilot Program are working together to deliver these benefits statewide. Our partnerships with Florida’s universities and health systems, our CLIA-CAP certified sequencing laboratory and our translational research programs ensure that Florida’s children receive advanced diagnostics supported by cutting-edge science. Florida’s investment through the Sunshine Genetics Act reflects a strong commitment to providing families with answers, hope and access to the most advanced tools in modern medicine.

There are more than 7,000 pediatric rare diseases affecting approximately 30 million people in the U.S. What approaches offer the most promise in giving families answers and combating these diseases?

Although more than 7,000 pediatric rare diseases exist, many are caused by changes in a single gene. This is why genomics remains the most promising avenue for reducing the diagnostic odyssey and for developing targeted treatments. Advances in whole genome sequencing and computational analysis now allow us to identify the genetic cause of many conditions within days, offering families clarity that previously took years to obtain.

The next step is to pair diagnosis with intervention. Gene-based therapies, including gene replacement, gene editing and RNA-targeted approaches, offer the potential to correct the underlying cause of disease rather than only managing symptoms. At the Florida Institute for Pediatric Rare Diseases, we are building the scientific and clinical infrastructure required to bring these innovations into practice, supported by our genome sequencing laboratory and our Viral Vector and Genome Editing Core.

Equally important is statewide coordination. Through the Sunshine Genetics Act, Florida is integrating genomic testing into routine pediatric care, enabling responsible data sharing and accelerating discovery across institutions. This system ensures that families have access to expert guidance, rapid answers and individualized care.

What role is the Florida Institute for Pediatric Rare Diseases playing to improve outcomes for children with rare diseases?

The Florida Institute for Pediatric Rare Diseases was created to improve outcomes for the more than 15 million children in the United States affected by rare diseases. Although each condition is uncommon, families need timely diagnosis, coordinated care and access to emerging therapies. Our institute brings these elements together by integrating clinical services, advanced genomics and translational research.

Through our statewide infrastructure, our genetic counselors, clinicians and sequencing specialists provide rapid, comprehensive diagnostic evaluations in the Precision Pediatrics Clinic and our CLIA-CAP certified whole genome sequencing laboratory. This significantly shortens the time to diagnosis and offers families clear, actionable guidance.

Our research programs further strengthen this work by developing disease models, identifying therapeutic targets and advancing gene-based treatment strategies. Support from the Sunshine Genetics Act has enabled us to build one of the nation’s most forward-looking pediatric genomics programs. We also collaborate closely with universities, hospitals, foundations, legislators, and advocacy organizations to connect families with clinical trials and support networks. This coordination ensures that families are not navigating rare disease care alone.

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Emily Shiel is a generous and driven doctoral student who dedicates her time to research and giving back to her community.

As a leader in the Biomedical Sciences Graduate Student Association, Shiel creates a supportive environment for other graduate students and volunteers with the Tallahassee Science Festival every fall.

She has received a Predoctoral Individual National Research Service Award from the National Heart, Lung, and Blood Institute and a Predoctoral Fellowship Award from the American Heart Association for her research on immune signaling in cardiac diseases. Shiel presented her research to Florida legislators and scientists at the 2025 Rare Disease Day symposium.

What drew you to attend Florida State University?

I chose to attend Florida State University because of its strong biomedical sciences program, collaborative research environment and supportive faculty. I was drawn to FSU’s opportunities to engage in cutting-edge cardiovascular research and its emphasis on translating science to increase public understanding. The welcoming atmosphere at FSU made it clear that I could thrive in my academic and personal life.

What are your proudest academic accomplishments?

My most significant academic accomplishments include receiving a National Institutes of Health Predoctoral Individual National Research Service Award from the National Heart, Lung, and Blood Institute and a Predoctoral Fellowship Award from the American Heart Association. These competitive and prestigious grants not only supported my dissertation research but also recognized the significance of my work on immune signaling in cardiac diseases. Receiving these awards has been an honor and recognition of my potential as an independent scientist.

How do you give back to your community?

In 2025, I presented my research on the impact of inflammatory signaling in heart diseases at the Rare Disease Day symposium hosted by the College of Medicine’s Institute for Pediatric Rare Diseases before an audience that included scientists, Florida legislators and individuals living with rare diseases. This experience taught me to translate complex biomedical findings into language accessible to the public while also emphasizing the importance of continued investment in rare disease research. Sharing my work in this setting highlighted both the human impact of scientific discovery and the role researchers play in advocating for patients and their families.

How have you seen the impact of your community service?

Through my research, I have contributed to FSU’s reputation as a hub for innovative cardiovascular science, advancing knowledge that will improve patient outcomes. I have disseminated my findings at national conferences. Beyond the lab, my leadership in the Biomedical Sciences Graduate Student Association has fostered a more inclusive and supportive environment for graduate students. Through BSGSA, I work to foster a love for science in K-12 students by participating as a judge in the Capital Regional Science & Engineering Fair and volunteering at the Tallahassee Science Festival each fall.

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Florida State University’s International Genetically Engineered Machine (iGEM) student team brought hands-on science to life for hundreds of local families at the third annual Tallahassee Biotechnology Expo last week, turning the Challenger Learning Center of Tallahassee into a showcase of biotech experiments, live demos and student-led research. 

The expo, which was held July 19, featured the iGEM team and other university presenters, who shared their work with children from kindergarten through eighth grade with hands-on activities related to biotechnology. 

Nearly 500 visitors attended the event, the largest turnout in the expo’s three years, with 14 exhibitors present from FSU and the greater Tallahassee area. 

“We’re proud to partner with FSU iGEM on an event that brings science to life for young students and families,” said Alan Hanstein, executive director of the Challenger Learning Center of Tallahassee. “The growth of the Biotechnology Expo shows what’s possible when passionate students lead the way in inspiring future innovators.”

FSU’s iGEM team organized the event as part of its responsibilities for the upcoming International Genetically Engineered Machine Grand Jamboree, which will take place Oct. 28-31 in Paris. The iGEM competition has been running annually since 2004 and is the premier student synthetic biology research competition. 

Teams must complete various tasks as part of the competition. The biotechnology expo helps the FSU team fulfill the “education” requirement for their work to educate the public about synthetic biology. 

Along with organizing the expo, FSU iGEM shared the group’s work in the Challenger Center’s IMAX Theater, where team members took visitors through their work to design and build innovative biological systems. 

The team earned a gold medal at the 2024 iGEM competition for their project to address a rare metabolic disorder called trimethylaminuria, which causes a strong body odor released through sweat, breath and urine. FSU iGEM created a monitoring device that could guide a patient’s treatment by monitoring the level of trimethylamine, the molecule that causes the odor, in the breath. 

That work was the continuation of a previous year’s project that earned a silver medal and continued within what is now the Florida Institute for Pediatric Rare Diseases, a program within the FSU Health initiative designed to bridge critical gaps in pediatric rare disease care through research and clinical work. 

“It’s so rewarding to connect with our community while sharing the significance of our research,” said Vicky Montalvo, associate team lead for the 2025 FSU iGEM Team. “It is not only an opportunity to foster connection between the public and academia, but it is especially rewarding because the research done in iGEM is inspired by present problems we see in our community.” 

“When teaching K-8 students about biotechnology at the expo, we all were pleasantly surprised at how many kids are already passionate about this field, and how bright and inspired the next generation of scientists is,” she said. “With this event, it really felt like we were paying it forward, seeing as many of the current members on 2025 FSU iGEM team were inspired by their predecessors to partake in the world of biotechnology.”

In addition to the iGEM presentation, attendees had a variety of exhibits to choose from. They could explore strawberry DNA extraction, learn how cell-to-cell communication works or build simple prosthetic hands using everyday materials. Other exhibits showed off shark jaws, shark tracking devices, deep sea coral and oyster shells or shared the basic principles behind fundamental fluid mechanics in a kid-friendly way. 

FSU’s Neuroscience Graduate Student Association (NGSA) brought devices that use electrodes to show nerves in action or to involuntarily move a participant’s muscles. 

“The association presented at the bioengineering expo since it began a few years ago, and it’s the perfect opportunity to connect with the Tallahassee community,” said NGSA President Ryan Ochoa. “We love the excitement and energy of children and parents. The best parts are getting to see everyone exposed to something new for the first time in their lives and the questions filled with curiosity that immediately follow. This year we met a family that traveled nine hours just to attend the event. That really puts into perspective just how meaningful our contributions are.” 

Organizers have plans to continue growing the expo in future years to inspire the next generation of STEM researchers and leaders. 

Visit the FSU iGEM website to learn more about this student group and their work. 

Visit the website for the Challenger Learning Center of Tallahassee, the K-12 outreach facility for the FAMU-FSU College of Engineering, to learn more about upcoming educational programs.

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Researchers at Florida State University are helping to develop the next-generation technologies and breakthroughs that will have positive impacts on Florida and the world. In medicine, childhood literacy, weather forecasting, food safety and other fields, FSU researchers are providing expertise and solutions to help solve difficult problems.

Here are some of the ways FSU is making a difference:

Magnifying Impact: The National High Magnetic Field Laboratory

FSU is home to the National High Magnetic Field Laboratory, the largest and most powerful facility of its kind in the world. Each year, it hosts thousands of researchers whose work tackles critical questions in materials, technology, energy, health and the environment. With generous support from the Florida Legislature, MagLab scientists and engineers have developed a revolutionary process that would potentially extract $20 billion worth of previously untapped rare earth materials from phosphogypsum stacks across central Florida.

Pioneering Medical Research to Combat Rare Pediatric Diseases

The Institute for Pediatric Rare Diseases (IPRD), a key initiative of the FSU College of Medicine, is transforming the landscape of rare disease research, treatment and advocacy. Some of IPRD’s cutting-edge initiatives include establishing a whole-genome sequencing lab, expanding genetic counseling services and funding over 20 active research projects. With strong backing from university leadership, legislative funding and community partnerships, the institute is accelerating medical advancements that will improve the lives of children and families worldwide.

Enhancing Extreme Weather Predictions with Innovative Techniques

Researchers at the FAMU-FSU College of Engineering have developed Empirical Quantile Mapping with Linear Correction (EQM-LIN), a groundbreaking technique that improves the accuracy of extreme weather forecasts. Through integrating advanced statistical modeling with bias correction techniques, EQM-LIN enhances weather projections, aiding disaster preparedness. Initially focused in South Florida, this research is expanding statewide to help stakeholders identify flood-prone areas and protect vulnerable infrastructure.

Equipping Children with a Lifetime of Literacy

Since 2002, the Florida Center for Reading Research (FCRR) has been a driving force in advancing literacy through evidence-based research and innovation. By developing reading resources, assessment tools and interventions, FCRR supports learners of all ages, ensuring reading is accessible to all. Collaborating with educators, policymakers and researchers worldwide, FCRR’s efforts are transforming literacy education and improving learning outcomes.

Leading Innovations in Food Safety

Researchers at the Anne Spencer Daves College of Education, Health, and Human Sciences are developing rapid, standardized tests for detecting foodborne pathogens. Offering unmatched speed and efficiency, these tests are invaluable for stakeholders such as food processors and testing labs. FSU research also helped to develop the RIGHTTest, a seafood identification tool used by SeaD Consulting to detect mislabeled shrimp. Innovations like these promote transparency and accountability, playing a crucial role in ensuring public safety in the food industry.

Advancing Research and Response in Emergency Management

The Emergency Management and Homeland Security Program at FSU stands out for its leadership in preparedness, response, recovery and mitigation across diverse emergency scenarios. Its members actively contribute to the Florida Division of Emergency Management’s State Emergency Response Team (SERT) and the Florida Urban Search and Rescue (US&R) system, assisting in air operations and disaster response efforts, such as those following Hurricane Idalia. Beyond field operations, the department is nationally recognized for its cutting-edge research. A current study on information transmission within unmanned aircraft systems explores potential cybersecurity risks to U.S. infrastructure. As innovations in technology advance, this research plays a vital role in safeguarding government agencies and the public.

Empowering Veterans for Academic and Career Success

FSU’s Student Veterans Center (SVC) is a national leader in supporting student veterans and helping them achieve academic and career success. Enlisting in the U.S. military equips individuals with valuable skills such as strong decision-making and self-discipline, which are highly sought after by employers. However, challenges like limited prior higher education and a lack of workforce experience can impact veterans’ career opportunities. The SVC not only makes higher education more accessible but has also increased student veteran graduation rates by 15% in recent years. By ensuring veterans have the support they need to complete their education, the SVC helps produce highly skilled and desirable employees for the workforce.

Expanding Health Care Access and Research

With the goal of improving access and innovation in health and health care in Northwest Florida, Florida State University has announced plans to build an acute care hospital in Panama City Beach. The planned hospital will be located in the same medical district and adjacent to a new medical office building that opened in July 2024 and currently offers primary care, urgent care, cardiology and pulmonary services. Beyond meeting community health care needs, the campus is distinguished by its commitment to advancing research in aging and digital health, ultimately enhancing the quality of life in this region and beyond.

Restoring Apalachicola Bay

The Apalachicola Bay System Initiative (ABSI) was established at FSU’s Coastal and Marine Laboratory to help restore what was once a top fishery. After four years of research and stakeholder engagement, ABSI developed a community-centered restoration and management plan for Apalachicola Bay. This plan outlines five key goals supported by research-backed strategies, serving as an ‘ecosystem roadmap’ that the legislature is encouraged to adopt. Implementing this framework will restore the bay and foster a thriving economy.

Optimizing AI to its Fullest Potential

Recognizing the growth of AI, Florida State University is equipping future professionals with expertise in emerging technologies. The College of Nursing, for example, is the first nursing school in the nation to offer a concentration in AI Applications in Healthcare, bridging the gap between AI and nursing practice to improve patient outcomes and efficiency in health care delivery. At the College of Law, groundbreaking research explores the intersection of AI and law, reinforcing FSU’s leadership in legal education. Through integrating AI into coursework, FSU ensures students are prepared to succeed in an evolving world across all fields of study.

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The 2025 Dance Marathon at Florida State University (DM at FSU) was destined to achieve milestones, as it was the 30th year the university and the greater Tallahassee community came together to support pediatric health care.

A second milestone was achieved when “the reveal” showed this year’s dance-fest raised $1,334,457 and change, surpassing last year’s $1.24 million to support Children’s Miracle Network pediatric programs in the Gainesville area and pediatric outreach programs of the FSU College of Medicine.

The total includes $258,985 raised by middle school and high school partner marathons in Leon and Wakulla counties.

“Thank you for bringing our community together for a cause,” said Darcy Sullivan, executive director, as she addressed the crowd shortly before the reveal. “This has been the best year of my life.”

“When we all believe in miracles, anything is possible,” she said.

An estimated 1,500 students participated in the event Feb. 28-March 2 at the Donald L. Tucker Civic Center. Including this year’s total, DM at FSU – FSU’s largest student-led organization and the fifth-largest Dance Marathon in the United States – has raised more than $22 million.

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Rep. Adam Anderson (R-Palm Harbor) will be joined by Florida State University President Richard McCullough and members of the FSU Board of Trustees on Friday to announce the filing of HB 907, a pivotal bill that will codify the Florida Institute for Pediatric Rare Diseases (IPRD). The legislation also establishes the Sunshine Genetics Pilot Program within the institute, which will be a three-year initiative offering optional additional screening for Florida’s newborns.

This announcement, to be held at the FSU College of Medicine on Rare Disease Day, highlights FSU’s commitment to pediatric rare disease research, treatment and awareness. Rep. Anderson’s leadership was instrumental in creating IPRD — a tribute to his son, Andrew, who passed away from Tay-Sachs Disease in 2019.

Also speaking at the news conference will be Oralea Marquardt, past president of the National Tay-Sachs & Allied Diseases Association (NTSAD). Marquardt became part of the NTSAD community in 2007 after her son, William, was diagnosed with GM1 gangliosidosis, a disease with similar pathology and symptoms to Tay-Sachs disease.

Provost Jim Clark, Vice President for Research Stacey S. Patterson, College of Medicine Dean Dr. Alma Littles and IPRD Director Pradeep Bhide will also be joining Anderson, Marquardt and McCullough at the news conference.

Following the news briefing, a symposium will showcase rare disease research from across FSU departments. The event will include a keynote address from Dr. David H. Ledbetter, the inaugural Associate Director for Precision Medicine at IPRD. By leveraging the expertise of multidisciplinary teams, the institute is driving innovation in medical research and strengthening efforts to combat pediatric rare diseases.

Media representatives are encouraged to attend the event to help shine a light on rare childhood diseases:

FRIDAY, FEB. 28 

NEWS CONFERENCE: 9 A.M.

SYMPOSIUM TO FOLLOW 

FSU COLLEGE OF MEDICINE 

1115 W. CALL ST. 

TALLAHASSEE, FL 

Follow this link for the full news conference and symposium program.

Parking is available in the Spirit Way Garage on the corner of Stadium Drive and Spirit Way. Media members who are covering the symposium should RSVP to Bill Wellock by 5 p.m. Thursday, Feb. 27.

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