What is The Jack Pribaz Foundation?
What is The Jack Pribaz Foundation?
Mike and Liz Pribaz, along with close friends Brian Baird and Eric Pierce, started this tax exempt 501(c)(3) charity in December of 2011. The Pribazes’ son, Jack, then not quite three years old, was the first known case of KCNQ2-related epilepsy in North America. In the beginning, it was a lonely journey!
Researchers and doctors who knew Jack assured us of two things: other patients would be found, and the research they were doing would advance knowledge of both KCNQ2-related epilepsy and epilepsy in general.
The Foundation used the incredibly generous donations we received to fund research and raise awareness. In the laboratory, new tests were developed and new hypotheses formed. As more diagnoses were made, other families connected with us. By the summer of 2014, there were over 100 known cases. That number doubled in another year. It is expected to keep growing as access to better genetic testing and awareness of this condition continues to improve.
It’s important to note that no money raised by the Foundation has ever been or will ever be used to benefit Jack or his family; the Foundation uses all of the money it raises to support research and increase awareness about KCNQ2-related epilepsy.