The recipient charity for 2014 was the Sanfilippo Children’s Research Foundation.
Children with Sanfilippo Syndrome are missing an essential enzyme that breaks down a complex body sugar called heparan sulfate. This sugar slowly builds in the bones, the brain, and other organs stopping normal development and causing hyperactivity, sleep disorders, loss of speech, mental retardation, dementia, and finally death by the mid-teens. There is currently no cure or treatment.
Entitled “A Life For Elisa” the ultimate goal of the foundation is to raise money to fund research and hopefully find a cure in Elisa’s life time – it is a daily crusade that the Linton family willingly charts. Siblings Jessica and Connor, along with their parents, have devoted their lives to helping Elisa and bringing hope to every family who has a child afflicted with Sanfilippo syndrome. Their community of friends, medical specialists and local businesses have all joined in, surrounding this family with love, prayers, financial support, and volunteering in special ways, helping to raise over $7 million for research since 1999 with a remarkable 96% of every dollar donated being committed to research. While Sanfilippo occurs once in 24,000 births, successful research into the disease could apply directly to related genetic conditions that affects 1 child in 5,000.
The goal of the Sanfilippo Children’s Research Foundation is to fund medical research to find a cure for Sanfilippo Syndrome and its related neuro-genetic disorders.
Visit the Sanfilippo Children’s Research Foundation’s website for more information.
