Zelienople event aims to raise $2 million for family’s clinical trial
ZELIENOPLE — Not even the severe winter weather deterred the small businesses of the borough’s Main Street from stepping up on Tuesday night, Jan. 27 to support a 10-year-old boy battling a rare and deadly illness.
As part of the Winter Open Air Market fundraiser, over two dozen small businesses contributed part or all of their proceeds for the night to the family of Jackson “Jax” Ramirez, who has been battling the autoimmune disease IPEX for most of his life. The disease leaves him severely vulnerable to even the most common infections, and has led to him largely leading a life of isolation.
“It’s overwhelming and heartwarming to think that a community of businesses could come together to help our cause,” said Jax’s father, Peter.
The Ramirezes are in need of $2 million so that Jackson — or “Jax” for short — can participate in the second phase of a clinical trial at Stanford University, which is seeking to find a treatment for IPEX. The first phase started in late 2024 and lasted roughly a year, showing encouraging results.
Jax’s mother, Missy, believes Tuesday night’s Winter Open Air Market will raise the necessary funds all on its own.
“The goal is still $2 million and we’re going to get it tonight,” she said. “We’re hoping that (people will) consider it a winter wonderland and come out anyway because it’s for a good cause. And why not get out of your house for a little bit?”
During the Winter Open Air Market on Tuesday night, Missy Ramirez volunteered her time at ShuBrew, where members of the Rotary Club of Zelienople poured drinks and donated their night’s gratuities to the cause.
ShuBrew was far from the only business taking part in the festivities. According to Missy Ramirez, over 30 Zelienople businesses were involved in some way.
“Baldinger’s Candy store is going to be open and donating its proceeds,” she said. “Spring & Main made special cake pops and desserts in honor of Jax and his soccer team. Almost everybody’s doing something major and big.”
The Harmony Fire District also got involved by selling fire blankets to raise money for the family.
Meanwhile, Jax, his brother, Lincoln, and his father were the guests of honor at Burghers Brewing, where Jax once again ordered his favorite dish.
“It’s a ‘double down’ beef patty with American cheese, bacon and pickles and sauce on the side,” said Fiore Moletz, the owner of Burghers Brewing. “He orders the same burger once a week, at least. Sometimes twice.”
For Tuesday night’s festivities, Burghers Brewing made the “Jax Burger” a house special and all proceeds from sales of that particular burger went straight to the Ramirez family.
“We made that burger tonight for other guests to enjoy and then the proceeds from that burger are going to go to their fundraiser,” Moletz said.
For Jax, whose illness makes it difficult for him to visit any public places without risking his health, it was a rare opportunity to eat in-person at a restaurant. Whenever Jax orders his “Jax Burger,” it is usually his mother who picks it up at the restaurant and then takes it home.
However, according to his father, it wasn’t even the first time this week Jax got the opportunity.
“During the snowstorm on Sunday, ShuBrew was open,” Peter Ramirez said. “Since his medication was scaled back and he has fewer symptoms, we thought it was time to get out a little bit more and Jax told me something that stuck in my mind.”
“I said, ‘I never get to go to any restaurants,’” Jax said. “So it was very exciting.”
Missy Ramirez said there are “already talks” about holding a similar event this spring.
