BENEFITING: Beyond Batten Disease Foundation
EVENT DATE: Jul 31, 2016
Batten disease is a rare, fatal, inherited disorder of the nervious system that usually begins in childhood. The first symptom is usually progressive vision loss in previously healthy children followed by personality changes, behavioral problems and slow learning. Progressive loss of motor functions (movement and speech) start with clumsiness, stumbling and Parkinson-like symptoms; eventually, those affected become wheelchair-bound, develop psychiatric symptoms, are bedridden, and die prematurely.
Little is known about Batten disease, and, sadly, at present, little is being done to find a cure for this nasty disease. Every year, many families around the world are devastated to learn that their beautiful children are innocent victims of Batten disease. Three years ago, my cousins Jessica and Tim Clark were diagnosed with Batten. It is a disease not just borne by those diagnosed, but by all friends, family and loved ones as well.
Organizations like the Beyond Batten Disease Foundation, the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease, and many others are seeking to find a cure and prevent families from losing their children to Batten disease. Please join me in contributing to their efforts. Thank you very much for any and all help. For Jessica and Tim Clark and family and the many others affected by Batten Disease.