For children facing rare diseases, tomorrow's breakthroughs often begin with the generosity of people who believe a better future is possible.
For families like the Clausens, that generosity represents something deeply personal: hope.
When Aaron and Kelsey learned during pregnancy that their daughter, Colette, had tuberous sclerosis complex (TSC), they knew she would need specialized care. Their search led them from Iowa to Cincinnati Children's, where Colette has received expert care since before she was born.
Now 2 years old, Colette is happy, developing and reaching milestones her family once feared might be out of reach. While TSC is a lifelong condition, her story reflects the progress that is possible when compassionate care and research go hand in hand.
"Colette's diagnosis opened our eyes to a condition we had never known existed and to the challenges so many families face every day," said Doug and Joanie Clausen, Colette’s grandparents.
That realization inspired the Clausen family’s $5 million gift to Cincinnati Children's that will launch a multi-year TSC research initiative and help create a better future—not only for Colette, but for every child and family affected by the rare genetic condition.
Cincinnati Children's researchers helped lead the studies that resulted in the first FDA-approved treatment specifically for TSC—a milestone made possible through years of research and philanthropic investment.
"What we've been able to do with philanthropy and with donors is basically say, 'We have an idea and we think it could be big, but we can't get other people to buy into this yet until we can show them that it's got legs. It's got momentum. It's got promise,'" said Darcy Krueger, MD, director of the Tuberous Sclerosis Clinic.
"Philanthropy has been essential for our tuberous sclerosis research program here at Cincinnati Children's."
For the Clausen family, supporting research is a way to create a brighter future not only for Colette, but for every child and family whose lives may be changed by the next breakthrough.
(Published August 2026)
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