• Jon Bari

ABC News Shines a Light on Celiac Disease in the America Strong Segment

Thank you World News Tonight with David Muir for featuring a story with Jax and his friends telling the world about Celiac Disease during Celiac Awareness Month in May. Go Jax!


Text of Jax's Letter to David Muir at ABC's World News Tonight, May 5, 2021


Dear Mr. Muir,

When I turned 8 in May, I wished for a cure for Celiac Disease for me and 3 Million Americans with Celiac. I watch you every night on World News with my dad, just like my dad grew up watching Walter Cronkite with his father. You are a great storyteller and I learned so much from you, including about the NIH. Eating without fear is our hope. Food insecurity for Celiacs happens everyday (because of the constant threat of cross contact with Gluten, 80% of foods have Gluten in them, and Gluten is not required to be labeled on packaged foods in the US like it is in Canada and Europe). I recently wrote to President Biden asking for help and wanting to meet with him to share my ideas. Can you help tell the Celiac story this May which is Celiac Awareness Month? Thanks.

Sincerely, Jax


Jax's Letter to President Joe Biden, April 30, 2021

As Jax mentioned to David Muir, Jax also wrote to President Biden asking for help with the NIH and FDA and requesting a meeting to share his ideas about Celiac Disease.


Text of Jax's Letter to President Joe Biden, April 30, 2021

Dear President Biden,

When I turned 8 in March, I wished for a cure for Celiac Disease and the 3 million Americans with Celiac. To find a treatment and a cure, we need more than $3 million in NIH research per year. Eating without fear is our hope. Food insecurity happens everyday for Celiacs like me. I want to meet with you at the White House to tell you about my ideas about helping Celiac patients like me in May which is Celiac Awareness Month. Thank you.

Sincerely, Jax


Jax's Goals

As Jax shared with Mr. Muir, his main goals have been to:

  1. Increase Federal funding to find a cure and more treatment options, other than a strict Gluten Free diet for life (since only about $3 Million has been appropriated annually by the NIH to Celiac research over the past decade - about $1.00 per American per year with Celiac and that is not nearly enough); and

  2. Mandate that Gluten be labeled as a top food allergen on all packaged foods in the US, just like it is in Europe and Canada.

Philadelphia City Council Recognized Celiac Awareness Month & Honored Jax Bari and David Muir

On May 27, 2021, Philadelphia City Council issued a Resolution recognizing the month of May as Celiac Disease Awareness Month in Philadelphia and honoring eight-year-old Philadelphian Jax Bari and David Muir for shining a national light on ABC’s World News Tonight on the need for increased Federal funding for Celiac research and Federally mandated labeling of Gluten on all packaged foods.







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