The Gilmore Family Foundation Information

The mission of The Gilmore Family Foundation is to raise money to support childhood rare disease treatment, discovery, diagnosis, awareness and research. This work is extremely personal to us. We (Andrew Herrington-Gilmore and Lauren Giannini) established The Gilmore Family Foundation in summer 2022 in honor of our two children. As a family, we have lived the rare disease world since 2018. Our daughter, Mara (7), is in remission from severe aplastic anemia (bone marrow failure), and our son, Jay (5), has both ATRX syndrome and Cystic Fibrosis. We are the only family in the world to have been affected by all three diseases, and as far as we know, they are completely unrelated. A rare disease diagnosis is devastating. And as we and thousands of other rare disease families have learned, it is also extremely hard to find doctors who have the experience and resources to provide the coordinated care each child deserves. The entire process is mind-numbingly frustrating, terrifying, and exhausting. But as we have also learned, it absolutely does not have to be that way. Mara was treated at the MACC Fund Center for Cancer and Blood Disorders at Children’s Wisconsin, a dedicated clinic providing specialized and full wrap around care to kids with bone marrow failure. There aren’t enough words to describe our gratitude. No child deserves illness. But every sick kid deserves to be treated how the MACC Fund Center treated Mara. Through our experience with Jay, we learned no such dedicated center currently exists for kids with undiagnosed and rare diseases. Children’s Wisconsin is aiming to solve that problem with its Undiagnosed and Rare Disease Program. That is why, to ensure all kids with rare diseases get the care they deserve, all of our fundraising dollars will continue to go towards helping Children’s Wisconsin build out the first of its kind Undiagnosed and Rare Disease Program.