Her Story & Inspiration
While raising her healthy first son, Philip, Anne Rugari lost a second son, Nick, to Krabbe disease in 1987. He was only a year old when he passed away. Anne knew as she expected her third child in 1999, that the baby should be tested at birth for Krabbe disease, a rare, genetic disorder.
Gina tested positive and received an umbilical cord blood transplant at just three weeks of age to give her the missing enzyme she needed to stabilize the disease. Gina Rugari was a pioneer in the Krabbe world of medicine and research, being the fourth newborn in the world to receive a treatment for this terminal disease.
During her lifetime, she couldn’t walk and used a computer to talk, however, Gina was cognitively appropriate at every age. Gina attended school through her freshman year of high school. As her disease progressed to her peripheral nervous system, Gina lost her battle with Krabbe in the summer of 2015.
From Anne’s experiences with Krabbe disease and the loss of two of her three children, she was inspired to create awareness and educational opportunities to support patients and families affected by Krabbe. Anne founded, Partners For Krabbe Research (P4KR) to support and advance research by funding and collaborating with scientists, researchers and clinicians. Anne also is the Co- Founder and Vice-President of KrabbeConnect, a non-profit that bridges the gap between science and patient knowledge.
Just Like Me Too! is the second of two children’s books that Anne has written and published. Anne is dedicated in changing the outcomes of those affected by this terminal disease all in hope that there will be an effective treatment and possible cure for patients diagnosed with Krabbe disease . As a volunteer, Anne continues to expand her advocacy role in the rare disease community by working tirelessly to ensure that the needs of those affected by other rare disorders receive the best care and treatment available to them.
In her leisure time, Anne enjoys boating, walking the beach, riding her bike and making memories with her grandson, PJ.