M.A. Polce was a proud sponsor of the first annual My Pal Spencer Cookout and 9-Hole Golf Tournament. The event was held at Teugega Country Club on July 24th in hopes to raise funds and awareness for Cure Sanfilippo Foundation. The mission of this foundation is to fund crucial medical research to find a cure and fund costly clinical trials.
Spencer Smith, age 2, is the grandson of Rome natives, Kirk and Linda Hinman. Spencer suffers from Sanfilippo Syndrome. This rare, progressive and fatal disease affects 1 in 70,000 children. This disease is similar to Alzheimer’s, but in children.
Sanfilippo children are born healthy but with a change in their DNA that causes a significant enzyme to be made improperly or not at all. With this disease, brain cells suffer the most. Delays of the brain become apparent between 2-6 years of age causing speech problems, developmental delays, challenging behaviors, hyperactivity, and sleeplessness. Children with this disease face progressive dementia similar to Alzheimer’s, stealing away their skills and knowledge, until they pass away, often in their teenage years. At this time, there is NO cure.
Spencer’s family is determined to raise awareness about this devastating disease and help find a cure. His parents say,
“WE’RE FOCUSED ON GIVING SPENCER THE VERY BEST LIFE WE POSSIBLY CAN, AND TREASURING EVERY MOMENT WE SPEND WITH OUR LITTLE GUY. BUT THERE IS SO MUCH TO DO TO ADVANCE THE EFFORT TO FIND A SANFILIPPO CURE. WE HOPE OUR FAMILY AND FRIENDS CAN HELP US FUNDRAISE TOWARD THIS MISSION AND HELP US NOT ONLY SAVE SPENCER BUT CONTRIBUTE TO THE WORLD OF RARE DISEASE IN A MEANINGFUL WAY.”
The Smith Family
To learn more about Sanfilippo Syndrome and Spencer’s fight please visit: https://curesff.org/meet-the-families/spencer/