The 2026 My Pal Spencer Golf Tournament — the 10th annual! — to honor Spencer Smith takes place on July 20, 2026, in Rome, New York.

Each year, Spencer’s grandparents spearhead this annual golf tournament, along with the help of many, many volunteers, to support research to help children with Sanfilippo Syndrome.

Spencer was diagnosed with Sanfilippo Syndrome in 2016. Learn more about his and his family’s story.

Sanfilippo Syndrome is often referred to as being like Alzheimer’s, but in children. It is a terminal, degenerative disease that causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, dementia, and then die usually in their teen years. Sanfilippo Syndrome is caused by a single gene defect which leads to lack of a necessary enzyme in the body. This lack of enzyme results in the build-up of toxic storage in every cell, and is especially harmful to the brain. This build-up causes a cascade of detrimental effects and ultimately death. Currently there is no FDA-approved treatment or cure for Sanfilippo Syndrome.

Proceeds from the annual golf tournament benefit Cure Sanfilippo Foundation, which accelerates scientific development and access to a cure or therapeutic options for all affected by Sanfilippo Syndrome, drives advocacy to improve care and outcomes, and empowers families with information, guidance, and support to navigate the journey. Learn more about Cure Sanfilippo Foundation.