About the Nonprofit
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The mission of The Gilmore Family Foundation is to raise money to support childhood rare disease treatment, discovery, diagnosis, awareness, and research.
A rare disease diagnosis is devastating. Your child has a disease you know nothing about. You’re often working with doctors who have little to no experience treating it. Yet you have to make critical decisions about how and where your child should be treated. The entire process is terrifying, mind-numbingly frustrating, and exhausting.
With more research, better treatment, more education, and more experienced healthcare teams, each family’s fight will be that much more manageable. We will fund initiatives that equip families and healthcare teams with the resources necessary to fight so that each child has the opportunity to lead a happy, healthy, and fulfilling life.
Our daughter Mara is in remission from severe aplastic anemia (bone marrow failure) and our son, Jay, has both ATRX syndrome and cystic fibrosis. All are extremely rare, we are the only family in the world to have had all three diseases.
We have lived with the extreme angst, worry, and sorrow that comes with your child having a life-threatening or life-altering rare disease.
Finding the right team of doctors and professionals to care for your child is not easy in the rare disease world. It is not uncommon to go years without a diagnosis. When you do find the right team to care for your child, the sense of comfort is nearly indescribable. Mara was ultimately treated at the MACC Fund Center for Cancer and Blood Disorders at Children’s Wisconsin (CW). That was not where she was diagnosed, but it was one of many hospitals we consulted when deciding where and how she would be treated. It has taken years to get both of Jay’s diagnoses, let alone put together a team of doctors and therapists that make us comfortable that he will get the full attention and care he deserves.
Words cannot express the gratitude we feel towards Jay’s and Mara’s teams of doctors, nurses, PAs, therapists, researchers, and caretakers. Always communicating, always caring, always treating, always solely focused on the kids’ needs, they brought our little girl back to health and have allowed Jay to thrive despite his limitations. We can never possibly repay them.
So, we want to pay it forward.
We want to be sure all kids with rare diseases get the type of care we have fought so hard for Mara and Jay to receive.
We will fund initiatives that:
improve coordinated clinical care
specialize in taking a patient and family-centered approach to diagnose and treat children with rare diseases
advance rare disease research
increase awareness and knowledge of pediatric rare diseases
provide parents the peace of mind that their child has access to needed services
