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  • Writer's pictureJon Bari

World News Tonight with David Muir Reports, Young Celiac Disease Activist Invited to the White House

"And America Strong tonight, the boy you met right here. So many other children across the country seeing his story and what so many of you have done. That boy, brought to the White House." -- David Muir

On May 31, 2023, World News Tonight with David Muir reported a follow up #AmericaStrong story on Jax's Celiac Journey, "Young Celiac Disease Activist Invited to the White House." The story included Jax's meeting with President Biden and being invited to the White House to make his case to label Gluten on all packaged foods to senior staff with the White House Domestic Policy Council. We are grateful to David Muir for continuing coverage on the story that World News Tonight initially reported on May 19, 2021.

Celebrating Highlights of Jax Bari's Health Equity Advocacy During Celiac Disease Awareness Month

We feel that so much of our progress at Celiac Journey is rooted in that amazing story that David Muir reported on in May 2021 to commemorate Celiac Disease Awareness Month. We recently celebrated the many highlights of Jax's health equity advocacy over the past couple of years. We are so grateful to the entire team at ABC News!

Transcript World New Tonight with David Muir, #AmericaStrong, May 31, 2023

David Muir: Finally tonight here, as you know, May was Celiac Disease Awareness Month and you'll remember the boy who wrote me a letter. Well, what he's done since is "America Strong!" You first met Jax Bari from Penn Valley, Pennsylvania, right here, two years ago. He was just eight, reading the letter he wrote me.

Jax Bari: Hi, I'm Jax Bari and let me read my letter to David Mur on World News Tonight.

David Muir: Jax was writing about Celiac Disease, an autoimmune disorder triggered by eating Gluten.

Jax Bari: Dear Mr. Muir, when I turned 8 in March, I wished for a cure for Celiac Disease.

David Muir: Jax watches the news and hoped that we would help get the word out.

Jax Bari: I watch you every night with my dad. You are a great storyteller, and I have learned a lot from you, including about the NIH.

David Muir: The National Institutes of Health say 2 million Americans have Celiac Disease. That number could be even higher.

Jax Bari: Eating without fear is our hope! Food insecurity happens for Celiacs every day. Can you please help me tell the Celiac story this May, which is Celiac Awareness Month?

David Muir: And when his friends learned he was reaching out, they did too. They also have Celiac Disease.

Maggie Beck: I wish when I went to parties, I didn't have to bring my own food, and I didn't have to worry about cross-contamination.

Matthias Brockington: The only treatment for Celiac is a strict Gluten Free diet, which is pretty tough.

David Muir: Jax and his family would travel to Capitol Hill, asking for research, funding, and food labeling. Now 10, and in the 4th grade, he made it all the way to the White House, invited by President Biden. And so many of you at home were moved to help, including Pennsylvania State Senator, Amanda Cappelletti, who just today asked Jax to help her present a $100,000 grant to the Children’s Hospital of Philadelphia, for Celiac research. And so back here tonight...

Jax Bari: Hi David,

David Muir: Hello Jax!

Jax Bari: I’m checking in two years later, and now I am 10 years old. While researchers are working to find a treatment and a cure for Celiac, I’m working to get Gluten labeled on all packaged foods in the U.S., just like it is in 85 other countries worldwide.

David Muir: Keep going Jax, you’re helping so many!

"We are so proud of Jax. Please keep us posted along the way. I sense he's just getting started."--David Muir


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