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Institute for Pediatric Rare Diseases provides hope
The newly created Institute for Pediatric Rare Diseases ( IPRD ) positions the Florida State University College of Medicine to have a transformative impact while offering hope to children and their families searching for answers .
“ The goals are big , very bold and courageous ,” said IPRD Director Pradeep Bhide , Ph . D ., the College of Medicine ’ s Jim and Betty Ann Rodgers Eminent Scholar Chair of Developmental Neuroscience .
Florida Rep . Adam Anderson ( R-Palm Harbor ) publicly announced the institute ’ s launch on Feb . 1 during Florida State University Day at the Capitol , along with a $ 1 million grant for initial funding . In June , Florida Gov . Ron DeSantis approved an additional $ 5 million for the institute from the state budget .
Anderson , an FSU alumnus , initially approached university leaders with the idea of starting the institute in 2023 . His advocacy on behalf of the 350 million people worldwide with known rare diseases , including 30 million in the United States — half of whom are children — has a personal connection .
Anderson and his wife Brianne ’ s son , Andrew , was diagnosed with Tay-Sachs disease in 2016 and died in 2019 . The rare and fatal genetic disorder causes nerve damage in a child ’ s brain and spinal cord . According to National Institutes of Health data , it affects 1 in every 320,000 babies born in the US .
Tay-Sachs is one of approximately 7,000 known rare diseases .
“ In many ways , he ( Anderson ) is the engine that is driving this ,” said Bhide , who developed a five-year
plan for the institute that is broad in scope , lending itself to interdisciplinary contributions throughout the university and beyond .
FSU President Richard McCullough , Provost Jim Clark and Vice President for Research Stacey Patterson have thrown their full support behind the institute , which through the use of the initial seed money — and the promise of more to come thanks to the backing of Gov . DeSantis and the legislature — is already funding 13 projects . Those projects include research being conducted by FSU ’ s College of Arts & Sciences and the FAMU-FSU College of Engineering , in addition to the College of Medicine .
“ We have met many times … where we ’ ve said we want to do this and they ’ ve said , ‘ Ok , what do you need ?’” Bhide said of the university administration . “ There ’ s a lot of excitement , because ( IPRD ) fits with the FSU Health goals .”
That support included $ 2.5 million in matching funds , a portion of which Bhide said has been invested in the purchase of a new DNA sequencer
Florida State University College of Medicine
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