Sayreville Community Rallies for Jack’s Miracle: Fun Run and Fundraiser Set for November 22

SAYREVILLE, NJ – Jack, a two-year-old with a bright smile and growing curiosity, was diagnosed this summer with Infantile Neuroaxonal Dystrophy (INAD), a rare and progressive genetic disorder. The condition affects motor development, causing children to lose milestones even as they gain them. His family is now working to secure funding for a gene therapy trial that could potentially alter the course of his illness.

“Jack was one of our students at Lightbridge Academy,” said Kathy Sierra, assistant director. “His parents noticed some delays, and after following up, they found out he had this very rare genetic disorder.”

Sierra explained that the family’s goal is to raise $2.5 million, the amount needed to pursue a genetic therapy trial that may help slow or stop the progression of INAD. “It could either stop the progression completely or prolong his life beyond the expected time frame,” she said.

To support the effort, Lightbridge Academy and the Sayreville Little League are hosting a Fun Run and community fundraiser on November 22 from 11 a.m. to 3 p.m. The event will include an inflatable-costume relay race and obstacle course, wiffleball games, mini karate and soccer sessions, music, food vendors, and additional activities for families.

“We’ve had sponsors step up in an incredible way,” Sierra said. “People have covered everything from bounce houses to food and porta potties. The mayor, council, PBA, and local vendors are all helping out, and some vendors are donating proceeds as well.”

The family will be escorted by police from their home to the event, where Jack’s parents will have an opportunity to speak before the festivities begin. The event is designed as a fun, upbeat day for families while raising support for Jack’s treatment.

For anyone unable to attend, donations can be made through the Lightbridge Academy Foundation, Sierra said. Flyers include a QR code that links directly to the donation page, and all contributions should be designated for Jack’s Miracle Mission to ensure funds go directly toward his care.

“The disorder affects one in a million children,” Sierra said. “It’s unbelievable how rare it is. Every donation and every message helps bring hope to the family.”

The community is invited to attend, participate, and support Jack’s family. Sierra added that the family has been helped by ongoing events organized by local groups and businesses, and that staying connected has given them strength throughout this process.

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