Touch-a-Truck event in Zelienople will support fundraiser to cure rare illness
On Aug. 12, T & M Hardware’s Zelienople location will host a touch-a-truck event featuring the store’s rental equipment from 5 to 7:30 p.m.
Co-owner Samantha Post described the equipment as real life versions of children’s toys, like mini-Bobcats and skid steers.
“(Little kids) can pretend like they’re driving them,” said Post. She added children can take photos with them.
The event aims to pitch in toward funding for a clinical gene therapy trial to treat IPEX syndrome, a rare life-threatening autoimmune disease afflicting Jax Ramirez, an 11-year-old boy from Zelienople.
Jax has faced several medical conditions almost all his life due to the genetic disorder, including Type 1 diabetes, eczema, allergies, thyroid disease and severe gastrointestinal complications, said his mother, Missy Ramirez. Most patients do not survive beyond early childhood, she added.
Since Jax was diagnosed with IPEX in October 2021, his family has searched for a matching donor for a blood stem cell transplant.
Jax signed up for a clinical trial at Stanford University to find a potential treatment and underwent Phase 1 in 2024 and 2025.
“We’re currently trying to raise $2 million to bridge the gap between Phase 1 and Phase 2 of the clinical trial,” said Missy Ramirez. The touch-a-truck event will contribute toward that goal.
In October, she started the IPEX Foundation to raise money and awareness, and also to support other patients and families. She said she “reconfigured” an existing nonprofit, which at the time did not have means to get any work done. Since, then the nonprofit has raised $60,000 toward its goal.
“Our families are hurting, and without that money, this clinical trial will cease to exist,” she said.
She added the Zelienople community has played a key role in getting the foundation efforts off the ground.
“The community has really rallied around us to help us in many, many ways,” she said.
