Zelienople family raising money to enter second phase of Stanford clinical trial
For most of his life, 10-year-old Jackson “Jax” Ramirez, of Zelienople, has dreamed of doing what nearly all children of his age are able to do on a daily basis — to play and socialize with others in his age group.
“His biggest wish to Santa at Christmas was to play on a soccer team,” said Jax’s mother, Missy Ramirez. “His wishes are what typical kids his age do every single day without thinking.”
For Jax, this is virtually impossible, as he is one of a small number of children in the world to carry the rare, life-threatening autoimmune disease known as IPEX, a condition which leaves him severely vulnerable to infections. This has forced his family to keep him largely isolated from human contact.
Since Jax was diagnosed with the disease at age 4, the Ramirez family has spent years searching for a matching donor who could supply a life-saving bone marrow transplant. So far, none has been found. In late 2024, a new opportunity arose when Jax was enrolled in a groundbreaking clinical trial at Stanford University in California aimed at producing a viable gene therapy for IPEX.
While the first phase of the clinical trial showed encouraging results, the second phase is where the trial gets serious — and seriously expensive.
“Phase 2 is intended to see if the next set of clinical trials could result in efficacy for a real global treatment or cure for IPEX,” Missy said. “We need $2 million to buy the stem cell technology to begin to issue an application to the FDA.”
The Rotary Club of Zelienople has stepped in to help raise money for the Ramirez family through its inaugural Winter Open Air Market, to be held Tuesday, Jan. 27, along Zelienople’s Main Street.
All proceeds from the market will go directly toward the IPEX Foundation, a nonprofit which Missy founded in October.
“When Rotary found out about Jax and his story, being that he is a local child in our community, we immediately and unanimously decided to support the Ramirez family in whatever way they needed,” said Rotarian Rich Gigliotti.
Since then, the Zelienople Rotary has organized several fundraisers for Jax.
Gigliotti said he believes the club can hit the ambitious target of $2 million through the market.
“We have 30 confirmed businesses and vendors and we are adding more every day,” Gigliotti said. “There have been businesses from other local towns who have seen our information on social media and have reached out to get involved.”
For those who are unable to make it to the market, there are other ways to donate. The IPEX Foundation has set up a Venmo account which can be accessed through a QR code found on posters for the event. The posters have been posted on social media.
“I think the goal is very obtainable because of the multiple ways in which the IPEX Foundation is being supported,” Gigliotti said. “People can simply scan the QR code and make a donation.”
While the Ramirez family is putting most of their chips on the clinical trial, they are still looking for bone marrow matches just in case.
“We are still registering people on the national blood stem cell registry, because there could be a moment that he gets incredibly sick and that’s our only choice, even without a full match,” Missy said. “The medical team believes that this trial is the way to go for Jax because it will not introduce more detrimental medical issues with him.”
