Utica, NY – Utica Comets President Robert Esche announced today that Friday’s game will be a night to raise awareness for Sanfilippo Syndrome, a rare, fatal genetic disease affecting the brain and spinal cord.
The game on April 7 will consist of facts, videos and information regarding Sanfilippo Syndrome and how you can help find a cure through the Cure Sanfilippo Foundation. Spencer, a two-year old grandson of local couple Kirk and Linda Hinman, was diagnosed with Sanfilippo last August; over the past eight months, Kirk and Linda have devoted themselves to the cause, hoping to educate others on the extremely rare disease.
Affecting 1 in 70,000 children, Sanfilippo Syndrome, also known as Mucopolysaccharidosis III, occurs when a child lacks the gene/enzyme necessary to break down and get rid of large chains of sugar molecules (glucose). The glucose then builds up in body tissues and organs and clumps together in the brain. This results in the progressive degeneration of the central nervous system, causing a rapid degenerative decline. The disease has been described as an “Alzheimer’s for children,” as it typically takes its course around the age of three. Currently, there is no FDA approved treatment or cure available.
By partnering with the Utica Comets, Linda and Kirk hope to increase cognizance of the syndrome and generate funding to help pay for expensive and lengthy research.
“Sanfilippo is truly a severe disease that many people are not aware of,” said Comets President Robert Esche. “We hope this night will raise awareness and get people in our community and beyond invested in finding a cure.”
