WHAT IS SANFILIPPO SYNDROME?
IMAGINE ALZHEIMER’S, BUT IN CHILDREN…
Children with Sanfilippo Syndrome are born with a change in their DNA that limits their ability to breakdown and recycle natural cellular waste. As a result, toxins build in their bodies and disrupt normal cellular function. Brain cells suffer the most. Signs of Sanfilippo Syndrome are revealed to parents between 2-6 years of age in any combination of the following: speech problems, developmental delays, challenging behaviors, extreme hyperactivity and poor sleep. Children with Sanfilippo Syndrome are expected to experience progressive dementia similar to that seen in Alzheimer’s disease. Deterioration of skills and knowledge strip these children of age appropriate function. There is no cure for Sanfilippo Syndrome. Many children with this disease pass away in their teenage years.
WHY DO WE WANT TO KICK SANFILIPPO TO THE MOON?
Jacob Moon is an 15 year-old boy who was diagnosed with a fatal disease known as Sanfilippo Syndrome at the age of 7.
He is a trampoline-jumping, pancake-loving, Buzz Lightyear fan who has a massive fan base in his hometown.
Jacob is someone who needs a cure!
To learn more about Jacob, his family, and the fight for a cure visit the Cure Sanfilippo Foundation.
Follow Jacob’s Journey on Facebook.
“Jacob lights up the room with his smile.
He is such a wonderful kid.”
ABigail Bayer-Mertens Human | local high schooler & moonball 2018 volunteer
Mission
MOONBALL is an annual kickball tournament and family fun day organized by friends of the Moon family.
Our mission: To kick Sanfilippo Syndrome to the MOON!
Goals
01. AWARENESS
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We want people in our community to know about Sanfilippo Syndrome so that we can continue to embrace Jacob as a small-town superhero!
02. fun
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MOONBALL is a celebration of the connections between us. This community has a lot of love for the Moon family… and we are prepared to show it!
03. Support
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Jacob’s needs will continue to change. We want to provide financial assistance to help meet as many of those needs as possible.
04. cure
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We will support research until progress can be made to protect children from this debilitating disease.