BOCA RATON, Fla. — A Boca Raton family says they’re racing against time as they work to find a cure for their 4-year-old son who was diagnosed with a rare brain disease.

Last September, Jordan Ogman was diagnosed with TECPR2 and since then, his family has been working around the clock to help find a cure to save his life.

The Ogmans say Jordan rises to the occasion, time and time again, fighting every second of every day, for his ability to swallow, walk without falling, and articulate his thoughts and needs with his extremely limited ability to speak.

They added that TECPR2 has already robbed him of so much, including cognitive deficits and his ability to maintain balance and coordinate movements.

“After Jordan’s first birthday, he didn’t continue hitting the usual milestones. While he never regressed, we found ourselves cheering on inch stones, not milestones. This is a true race against the clock. This is a fatal, neurodegenerative, disease, and we need everyone to come together as a ‘think tank’ to save Jordan’s life,” said Stacey and David Ogman.

Scientists at the University of Florida are currently working on research with a goal of finding a solution.

The Jordan Ogman TECPR2 Research & Development Fund supports the research efforts at the University of Florida Powell Gene Therapy Center specifically for TECPR2.

This fund, in honor of Jordan Ogman, will help support and advance the research efforts around TECPR2, with findings being applied to future patients and educational opportunities for current and future physicians and researchers.

The community can also support the cause by attending a fundraiser this Thursday, February 20th at Museum 66 in Boynton Beach at 7 p.m.

The event will include a steak dinner, silent auction, and live music from Frank Barbato who will be performing Sinatra classics.

For more information about the event, click here:

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