BENEFITING: CURE SANFILIPPO FOUNDATION
ORGANIZER: Jeremy and Taylor
Taylor Singh wrote -LexFUN! and the Lexington Newcomers Club have joined forces to become a team: Spencer’s Sprinters! Our LexFUN! and Lexington Newcomer Communities adore the Smith family, we’re lucky and proud to have them as members, and we want to do all that we can for little Spencer! Like all toddlers, Spencer loves to splash in the pool with his daddy, dance in the yard with his mommy, and pet every puppy dog he can get my hands on. But unlike most boys and girls, he's battling against MPS-III, commonly known as Sanfilippo Syndrome. Sanfilippo Syndrome is a genetic neurological disorder that can be easily understood as the childhood Alzheimer's. Both are a death sentence, but where Alzheimer’s strikes people toward the end of their lives, Sanfilippo attacks kids just as they have begun to learn to walk and talk. Also unlike Alzheimer’s, Sanfilippo is considered an "orphan disease," which means there isn’t enough incentive for drug companies to pursue a cure. There are several teams of researchers around the world who are studying ways to treat Sanfilippo kids like Spencer who lack an enzyme that breaks down complex chains of glucose. Sadly, some of the treatments already put through clinical trials have not panned out. What this means is that without more awareness of this terrible disease, and crucially, the money to fund more research, many kids with Sanfilippo will die as their peers head off to high school. We don't want Spencer to be one of them. We don't want Spencer to stop being able to walk. Or talk. And eventually, to swallow. All of which could begin happening, progressively, as early as the year he should be entering kindergarten. He wants to live. Join us in helping Spencer in his fight! DONATE to Spencer’s Sprinters TODAY!