Boy fights for celiac awareness, funding

PENN VALLEY, Pennsylvania (WPVI) — Eight-year-old Penn Valley native Jax Bari was dealt a major blow when he was diagnosed with celiac disease. He’s now turned his efforts towards educating others and advocating for change.

On Wednesday, Bari was joined by family at the Pennsylvania State Capitol and recognized by the Senate for his work. A motion was introduced to designate September 13 as ‘Celiac Awareness Day.’

“Through his advocacy work, Jax has a very important goal of requiring gluten be labeled on all food packages,” said State Sen. Amanda Cappelletti.

Some may have first seen Bari as a third-grader in May after being featured on World News Tonight after writing a letter to anchor David Muir.

He’s also received correspondence from President Joe Biden regarding funding for research.

Bari has recruited nine legislators to the Congressional Celiac Disease Caucus.

The National Institute of Health spends about $3 million on celiac research each year, the lowest amount for any gastrointestinal disease. With his proven track record of getting things done, Bari is determined to change that.


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