A Night of WILL Power

GREAT NIGHT, GREAT CAUSE, AND YOU'RE INVITED! On Thursday, May 19, the WILL Power team will host its First Annual Night of WILL Power to benefit the Cure Sanfilippo Foundation. Come out to America's at 21 Waterway Ave. at 6:00 PM for bites, drinks, and a silent auction to help raise funding and awareness for Sanfilippo Syndrome! Will Byers, age 5, was diagnosed with this terminal disorder in March 2015. Sanfilippo Syndrome is a rare, progressive, genetic disorder that affects approximately 1 in 100,000 children. This disorder starts to shut down the brain and central nervous system in young children who are afflicted. Enzymes needed for cells to process cellular waste are missing or are poorly functioning. Over time, waste build up leads to severe disability, robbing a child of the ability to walk, talk, and do everyday activities independently, eventually leading to early death. The heartbreaking truth is that without funding there is no treatment. Without treatment, most Sanfilippo children do not reach adulthood. But, even now, we find HOPE. Ongoing upcoming clinical trials show extraordinary promise, but additional funding is needed to continue to fund these studies to execution, and to raise awareness about this disorder and others like it.