Ride Charlie’s carousel, and take a spin for Cole

The SETBP1 gene is located on the long arm of chromosome 18 at protein 12.3. This gene contains the instructions to produce SETBP1 protein. The protein is shown to be active in numerous tissues, predominantly in the brain.

DNA changes that lead to a decreased amount of SETPB1 protein are associated with SETBP1 disorder, a rare disorder, with only 40 cases known worldwide, that can cause a variety of symptoms, including developmental delays, autistic traits and seizures.

And Charlie Ford has a carousel at his Northwest Austin house.

Stay tuned for linkage of the above facts.

Austinite Cole Oyler turned 7 on Jan. 18, the day we posted my column about the fact that the now-closed Kiddie Acres carousel — which Ford purchased, dismantled, moved and remantled (I’m a professional. I get to make up words) — was up and running at Ford’s house.

Give me a minute and I’ll tie this all together in a way that should make you feel good about something nice Ford is doing Saturday with his carousel. It involves people with SETBP1 disorder, including young Cole (of whom there are photographs indicating he should be in the Head of Hair Hall of Fame).

Let’s have Haley Oyler, Cole’s mom, set up the story via highlights of an email she sent to Ford.

“Hi Charlie,” she wrote. “I am the mom of a child with a rare genetic neurodevelopmental disorder called SETBP1 disorder. He is a delightful little boy who coincidentally turned seven on the day the article was published about your success with getting the beautiful carousel up and running, Jan. 18.”

She told Ford that last year she started the nonprofit SETBP1 Society to spread awareness about the disorder. And she told Ford about Rare Disease Day.

“We are taking part in a fundraiser designed for rare disease organizations to spread awareness and raise funds for their cause,” Oyler told Ford. “The fundraiser culminates on Feb. 28 where organizations and individuals will take part in riding a carousel in San Francisco. However, for most of us, we will be participating

STEPHEN SPILLMAN / FOR AMERICAN-STATESMAN Charlie Ford speaks to his visitors in January as they ride the Kiddie Acres carousel he restored in his North Austin backyard. He’ll run that carousel again Saturday.