2025 ANNUAL REPORT / FLORIDA INSTITUTE FOR PEDIATRIC RARE DISEASES 41
tive people. That’ s been a real eye-opener – how other people are also motivated to help us get things done as well. And of course, Dr. Alma Littles has been one of the biggest champions from the very beginning. … We owe her a lot, as well,” Vied said. I mean, it takes a village, and we’ re a really small village.”
That village continues to grow. While all parties are grateful for the significant support from the Legislature and university administration, Bhide continues to look for new revenue streams and ways to maximize relationships. With Anderson’ s help, he’ s connected with Quest Diagnostics, which is exploring the possibility of outsourcing its genome sequencing to the Diagnostic Lab. Along with Ledbetter, Anderson has facilitated extended conversations with other corporate entities about assisting the Sunshine Genetics Pilot Project, specifically with sequencing the genome of 100,000 Florida newborns.
Ledbetter led the first Sunshine Genetics Steering Committee meeting at the University of South Florida in Tampa, which brought together experts from throughout Florida, including clinicians, researchers, hospital personnel, corporations and universities.
Vied called it“ humbling” to be in the presence of so many committed to the cause.
“ It was like,‘ What can we do? How do we help?’” she said.“ It was extraordinary.”
Then, again, so is the work already underway, as well as the vision for the future.
When asked about the magnitude and potential impact IPRD can have, Ledbetter said:
From the top, Boris Kantor, Ph. D., joined the College of Medicine from Duke University and leads IPRD’ s Viral Vector and Gene Editing Core. Saanchi Shah, Ph. D., arrived at IPRD from UCLA and is its first genetic counselor. IPRD Executive Director Pradeep Bhide, Ph. D., said“ building the workforce is a top priority.”
“ It will certainly be the No. 1 resource in the state of Florida for information on rare disease research, health care providers with expertise, patient advocacy groups, educational programs, conferences, etc. With the new gene therapy and gene editing core and research programs being established, it will also be a center of new treatments and cures for rare diseases that currently have no treatments.
“ Beyond Florida, it will be a model for other institutions and states to emulate and try to replicate.”