First, I thank you for the opportunity to educate you about Batten Disease. It is my hope and prayer that you will participate or donate to this event, which could bring hope to children with Batten Disease.
Our only grandson, Eric (age 13) was diagnosed with Batten Disease in the fall of 2004. In November 2007 our wonderful granddaughter, McKenna, was also diagnosed with Batten Disease. Eric is now almost completely blind, but plays baseball and hockey on special leagues. McKenna is in the early stages and enjoys learning to ice skate and attends a dance class. Let us hope their parents, Chris and Danielle, will be able to handle, mentally and physically, the many difficult challenges they will face.
Vital research is continuing at the University of Rochester. David Pearce, Ph.D., is organizing a Clinical Trial for Juvenile Batten Disease. Last year I donated $13,483 toward the $500,000 required for the design and initiation of this trial. All profits from our second event will be given to the “Make the Juvenile Trial Happen” fund. As of February 1, $272,825 has been raised.
We need your help – please consider participating or making a donation of BDSRA. We hope to see you on Saturday, May 9, 2009 at Bachman Lake in Dallas.
Yours truly,
Nancy and Scott Lowden
Eric and McKenna’s Grandparents
SPONSORED BY
BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION (BDSRA)
