THIENSVILLE, Wis. — An annual charity softball game, inspired by a tragedy that is deeply personal, has raised more than $500,000 towards researching a cure for Infantile Neuroaxonal Dystrophy (INAD).
The money has been raised over the 11 years that Mike and Kelly Grebe have hosted the annual event in memory of their children, Bridger and Essex, who were taken by the disease in 2010 and 2015 respectively.
INAD is a disease that Kelly calls "exceedingly rare."
"For the first year of life they’re developing everything normally. They’re crawling, they’re pulling up, they’re getting teeth, they’re saying words," she said. "Then, at about one-year-old they plateau and they start acting really like infants."
Now, Kelly, Mike and their family host this annual fundraiser to try and keep Bridger and Essex's memories alive, and to try and help others who have children with similar disabilities.
In recent years, Kelly says a separate foundation called the INAD Cure Foundation has vigorously been researching the disease and now the bases are loaded.
"The research is promising enough that they want to go towards clinical trials," said Kelly.
Those clinical trials will cost $2.7 million. That's why all of the proceeds from this year's fundraiser in Thiensville are going towards that foundation.
"Anything that we can do to find a cure, to prevent families from having to do this, or help families that are going through it," she said.
A family taking life's curve balls and finding opportunities to work towards beating this disease.