Anne Rugari lives in Clearwater, FL. She is the mother of Nicholas, who was born on May 16, 1986, and went to heaven on May 19, 1987, due to Krabbe disease. Her daughter, Gina, born on December 23, 1999, was also affected by Krabbe disease and was diagnosed because of her older brother. Gina received a cord blood transplant (CBT) in January 2000 and brought joy to all who knew her. Gina went to heaven on June 22, 2015. Anne continues to fight and advocate for families affected by Krabbe disease.

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