Caring for Kids with Rare Diseases
A rare disease diagnosis is devastating. Unfortunately, for our family and thousands of others, it is reality. It is also often extremely hard to find doctors who have the experience and resources to provide the coordinated care each child deserves. The entire process can be mind-numbingly frustrating, terrifying, and exhausting. But it absolutely does not have to be that way. We have personally experienced what kids and their families and medical teams can overcome in even the most difficult of circumstances.
Our Story
This work is extremely personal to us. 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 (4), has both ATRX syndrome and Cystic Fibrosis.
Through our personal experience, we have had a unique lens into the rare disease world. We have seen what works, what doesn’t work and what’s lacking. Out of gratitude for the care our kids have received and a desire to fix what’s broken and fund what’s working, we formed The Gilmore Family Foundation in 2022 with the hopes of easing the burden on all children and families dealing with childhood rare diseases.
Our Mission
The mission of The Gilmore Family Foundation is to raise money to support childhood rare disease treatment, discovery, diagnosis, awareness and research.
Our Cause
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.
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.
Upcoming Event
We are actively planning our second annual “Night Out” to raise money for the Rare Disease Program. The event will take place on April 26, 2024 in Chicago, Illinois. Hit the “Learn More” button below for more information.