Saturday, May 6, 5-10:30 p.m., Madison Event Center, Covington
Anne Rugari, founder of Partners for Krabbe Research, has lost two children to Krabbe disease, but she has made it her mission to save others.
She is hosting this year’s P4KR Derby Day Gala, with proceeds going toward research into the rare neurological condition that affects infants and children.
Money raised from last year’s gala supported brain and tissue research for Krabbe Disease at the University of Pittsburgh’s Medical Center.
Rugari’s son Nick and daughter Gina were born with the genetic illness. Nick died at 1 year; Gina helped pioneer an experimental treatment as a newborn. The stem cell transplant she received at 5 weeks of age helped slow the progression of the disease, and she lived to be 15.
Gina’s tissues were the first to be donated to the NDRD Brain and Tissue Bank in Pittsburgh. Anne Rugari is a consultant for the brain and tissue bank and assists families in making decisions to donate a child’s tissues.
Tickets for the gala are $65 and include live music, dinner, auction and an open bar.
krabbes.org, (859) 640-1633