Drew Sillman Batten Disease Fund

On May 3rd, 2017, Mike and Cara Sillman and received the most heartbreaking and devastating news a parent could hear. Their 6 year old boy, Drew, was diagnosed with a very rare, neurological condition known as Juvenile Batten Disease (cln3). The facts about this terrible disease are difficult to list. This fatal disease typically begins with vision loss. Seizures occur soon after and cognitive skills begin to fade. Communication will diminish and Drew will be bound to a wheelchair. Juvenile batten patients typically have a life expectancy into their late teenage years to early twenties.

There is hope with new developments in recent gene therapy research. We are raising funds to help the family with medical/travel/trial expenses and to increase awareness of this rare disease. The money raised will go to the Sillman family and likely to assist with expedited research as clinical trials are just around the corner.