OnScene has the pleasure of working with an extremely courageous group of individuals that head up the Batten Disease Support and Research Association. Knowing what I do about the families and the disease, I feel obligated to always give a brief explanation on a relatively unknown, fatal disease that attacks our children.

Batten Disease/NCL is relatively rare, occurring in an estimated 2 to 4 of every 100,000 births in the United States. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease/NCL become blind, bedridden, and unable to communicate and it is presently always fatal.

It’s been a very humbling experience wrapping my head around the struggles these families experience. Nothing in my life could even compare with what the mothers, fathers, brothers, sisters, family and children themselves endure. This organization has embedded a place in my heart, forever.

Improvements Made

Phase one in our project with BDSRA was to transport all of their ‘children of batten’ content into a profile manager with a sortable database. In phase two we improved the overall interactivity of the site by adding new content bins, a donation system, expanded profile use and a custom forum that helps improve information collection and sharing for families that are spread all over the world.

Angels Of Batten Webpage Snapshot