Hi! I am Anne Rugari and I live on the west coast of Florida. I have three children, Phil, Nick and Gina. Phil is married and has a family of his own. I am very blessed with my only grandchild, PJ, who calls me “Mimi”. Nick and Gina were born with Krabbe disease. Nick was born in 1986 and passed away in 1987 at a year old. Gina was born in 1999, diagnosed as a newborn and underwent an umbilical cord blood transplant at just three weeks of age. Gina was the fourth newborn in the world to receive a transplant for Krabbe disease. She received her “new life” cells at just 5 weeks old and was one of the pioneers who set the course for future patients born with Krabbe disease to receive a “hopeful” treatment to stabilize disease progression.

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