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Help 4-year-old fight brain disease at Boynton Beach fundraiser

Posted at 4:54 AM, Feb 20, 2020
and last updated 2020-02-20 04:57:17-05

BOCA RATON, Fla. — You can help a 4-year-old boy fight a deadly brain disease on Thursday.

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.

They are hosting a fundraiser 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.

Scientists at the University of Florida are currently working on research with a goal of finding a solution to TECPR2.

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 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.