About Us

The Will Herndon Research Fund was established in 2009 by Missy and Wayne Herndon, in honor of their son Will, who was diagnosed with juvenile Batten disease at the age of 6. This rare, fatal, genetic disease attacks an otherwise healthy child, beginning with vision loss, declining cognitive and motor skills and seizures. Affected children become wheelchair-bound then bedridden. Batten disease is always fatal, most often by the late teens or early twenties. The Herndons partnered with Beyond Batten Disease Foundation with a goal to SAVE WILL, and the hundreds of other children stricken with juvenile Batten disease.