Sadie Palooza benefits Sanfilippo Syndrome victims

Published 10:46 am Monday, August 6, 2018

A series of fundraising efforts are planned to help find a cure for Sanfilippo Syndrome.

Sadie Rae

In honor of 2-year-old Sadie Rae Haywood of Albemarle, organizers are sponsoring Sadie Palooza, a golf tournament, 5K run/walk and dinner & silent auction next month in Troy.

Sadie Rae suffers from Sanfilippo Syndrome, a progressive and fatal neurodegenerative disease that is considered to be like “children’s Alzheimer’s.”

Those affected by Sanfilippo lack an enzyme necessary to break down long chains of sugar molecules. The condition causes cellular dysfunctions, particularly in the brain. Symptoms such as hyperactivity or difficulty speaking often develop by age 2, and as the disease progresses, affected children lose the ability to walk, talk or feed themselves. By age 10, sufferers tend to require round-the-clock care. Life expectancy is 10-15 years.

In honor of Saving Sadie Rae, there will be a golf tournament at 1 p.m. Aug. 24 at Densons Creek Golf Course. On the following day, Aug. 25, at 8 a.m. there will be a 5K color run/walk at the James H. Garner Center. At 5 p.m. the same day and location (210 Burnett Street, Troy), there will be a dinner and silent auction. Donations are accepted.

Sanfilippo Syndrome affects 1 in 70,000 children. It affects the metabolism and leads to severe damages to the Central Nervous System, causing loss of memory whereby victims forget how to walk, talk and feed themselves.

Sadie Palooza is a fundraising push to get Sadie and other children living with the disease into trials before it’s too late.

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