Our Story



Kirby Wilson was diagnosed with Sanfilippo “B” Syndrome, a rare and catastrophic genetic disorder in 1995, at the age of four.  Sadly, Kirby passed away unexpectedly, yet peacefully, in her sleep on October 22, 2019.  Kirby was one of thousands of afflicted children worldwide.  There is no cure or treatment….yet. 

The Children’s Medical Research Foundation, Inc. was formed by Kirby’s parents, Sue and Brad Wilson, in 1995 to fund medical research and find a cure for Sanfilippo Syndrome and other neuro-genetic disorders.  To date, this not-for-profit Foundation has granted over $4.4 million to ten research groups with more than 95% of all receipts appropriated to fund research.

Sue and Brad’s resolve to find a cure remains unwavering.  Inspired by Kirby’s fortitude and will for happiness, they now strive to ensure her legacy – A Cure for Kirby.  

We invite you to learn more about Sanfilippo Syndrome, the Foundation, its work and how to help pave the way for a healthy future for all children afflicted.