Dozens of people hit the pavement at Wantagh Park for the fourth annual Kat Walk to raise awareness for an extremely rare disease.
KAT6A is a rare disorder that affects only about 350 people in the world and two are on Long Island – a 6-year-old named Will Reitzen and Tommy Sayres, an 18-year-old.
The KAT6A gene mutation is a spontaneous mutation, not inherited, that results in physical and intellectual disabilities.
The boys’ mothers banded together to raise awareness about the disorder through the KAT6A Foundation. Bellmore resident Aimee Reitzen says a big part of the foundation’s goal is research.
“We started a patient registry, which is a really secure database that researchers can access,” Reitzen says. “So, parents can go online, they fill out surveys about their child’s medical history so that we can have more information to give families out there and help more people.”
June Sayers, Tom Sayers' mother, says her son wasn't diagnosed with KAT6A until two years ago.
This year the Kat Walk has raised over $145,000 so far. The money collected by the KAT6A Foundation will go toward research.