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Driven by Love and Inspired by Hope

In April of 2022, Mike and Katie received the news no parent wants to hear. Their 15 month old, Collin, was diagnosed with a genetic disease so rare, there’s not even a name for it. The doctor simply called it MED13L, for the type of single gene mutation. The doctor explained children with MED13L have intellectual disabilities, severe language delays, seizures, heart defects and low muscle tone. There have been less than 1,000 cases reported. Currently, there are no treatments or cures.

the organization that we're donating towards

As Collin smiled up at his parents, Mike and Katie made the decision to be Driven by Love and Inspired by Hope. They took an active role in the MED13L Foundation, a grassroots group of parents collaborating with doctors and scientists to find a cure. The Foundation has tapped into a promising wave of new technologies that bring hope for transformative change in the lives of children affected by MED13L. Costs are staggering and there is no government or industry funding. Our focus is to find a treatment and cure for MED13L but we envision our research helping children with all kinds of genetic disorders.

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