Heritage Printing has the honor to work with Amy and Brian Fadden and their non-profit, Aislinn’s Wish, on a fund-raising golf tournament. Aislinn's Wish Foundation was founded to help find a cure for Sanfilippo Syndrome.
“In February 2015, we learned that our daughter, Aislinn, has a rare genetic disorder called Sanfilippo Syndrome. With no available treatment or cure, Sanfilippo will steal her voice, her mobility, and her ability to eat. Ultimately, it will steal her tomorrows.” Brian Fadden Learn more at: https://www.aislinnswish.org/
What is Sanfilippo Syndrome? Sanfilippo Syndrome (mucopolysaccharidoses, or MPS, type IIIA) is a progressive and fatal genetic disorder. It is a rare disease affecting 1 in 70,000 children, and both parents must be carriers for it to occur in their children.
What happens to children with Sanfilippo Syndrome? Children with Sanfilippo do not produce an enzyme necessary to break down the materials in cells. In this type of MPS, the buildup of materials occurs primarily in the brain, causing ongoing and progressive damage.
Children with Sanfilippo often appear normal at birth, but as build up continues, symptoms become more apparent, usually beginning around preschool age. Symptoms can include: hyperactivity, sleeplessness, loss of speech and bodily function, mental retardation, cardiac issues, seizures, loss of mobility, dementia. Children with Sanfilippo typically die in their teens. There are NO available treatments or a cure.
About the Foundation: Aislinn’s Wish Foundation is a 501(c)(3) non-profit organization created to improve the lives of children diagnosed with the rare, genetic, terminal disorder known as Sanfilippo Syndrome. The Foundation strives to promote awareness and contribute to scientific research, with the goal of finding a cure for Sanfilippo Syndrome.