Born a healthy and vibrant boy, Cristian was crawling and moving around in his crib like a typical baby. At age three to six months, his parents started to notice slight developmental delays. In 2012, he was diagnosed with a terminal, untreatable, non-curable genetic disease – Tay-Sachs. Cristian’s parents immediately sought out and received a plethora of information from the National Tay-Sachs and Allied Diseases Association (NTSAD) and The Mathew Forbes Romer Foundation, and received guidance on how to raise a child with a fatal genetic disease.
The MFRF has funded more than 30 pediatric and genetic nursing scholarships at academic institutions in South Florida, including Florida International University, Florida Atlantic University College of Nursing, and Nova Southeastern University. The grants specifically help more students receive a nursing education, especially those who are interested in genetics and pediatrics. As a result of the funding, student nurses are participating in genetics education programs, trained in in-home family care, and sent out to the community to provide their services – specifically to those familes who need information and counseling regarding health issues impacted by genetics.