
Celiac Journey
1000 FOLLOWERS
Celiac Journey was founded by Jon and Leslie Bari who are the parents of Jax and Lexi. We are working to foster greater understanding and inclusion of those who suffer from Celiac Disease.
Additionally, we are working to drive change in the research ecosystem so that hopefully in the short run, treatment options and a cure can be found, and we can return to our pre-Celiac life.
Celiac Journey
1w ago
“We are the United States of America. There is nothing beyond our capacity!”
-- President Joe Biden
President Joe Biden recently gave my 9 year old son Jax a couple of boxes of his POTUS M&Ms! Jax was so excited when he showed us the M&Ms in their special box featuring the "Seal of the President of the United States" and President Biden's signature! So cool, right? For most kids, they would have ripped the box open and gobbled up the M&Ms on the spot. Well, not so fast for those kids like Jax in the Celiac world with a potentially life-threatening food allergy to Gluten.
"Mom, can ..read more
Celiac Journey
2w ago
On December 6, 2022, the Bari family traveled to College Park, Maryland and met with senior FDA leadership to share their lived experiences and research on the unmet needs of 3.3 American Celiacs with the voluntary labeling scheme of Gluten. This was the latest presentation on Celiac Journey's "Label Gluten Now as a Major Food Allergen" campaign.
Dr. Virginia Stallings Joined the Clarion Call to Label Gluten Now
The Bari family was honored to have been joined at the FDA meeting by Dr. Virginia Stallings, a board-certified nutrition pediatrician, Professor of Pediatrics and Director of the Nut ..read more
Celiac Journey
2M ago
"It's me, hi, I'm the problem, it's me!" -- Taylor Swift
As a follow up to 9 year old Jax Bari meeting President Joe Biden on October 20, 2022 and asking for the President's help to protect him and 3.3 million American Celiacs by labeling Gluten as a Major Food Allergen (like it is done in 85 other countries worldwide), Jax took his case to the White House. On November 10, 2022, Jax, along with his parents Leslie and Jon Bari, met with staff from the White House Domestic Policy Council ("DPC") to share their lived experience presentation with the DPC on the Celiac community's request for help ..read more
Celiac Journey
3M ago
"Mr. President, Can you please help protect me?" -- Jax Bari, Age 9
Showing his trademark empathy, President Joe Biden engaged with my 9 year old son, Jax, when he asked the President for his help. We had just attended a rally for Pennsylvania Lieutenant Governor John Fetterman who is running for the United States Senate.
After President Biden finished his remarks, Gisele Fetterman, who is a nutritionist and supports Jax's goals, said, "Mr. President, I'd like to introduce you to Jax Bari." Jax took it from there and explained to President Biden that he has Celiac Disease, a potentially life ..read more
Takeaways from the White House Conference on Hunger, Nutrition and Health, Let's Get Gluten Labeled!
Celiac Journey
3M ago
It was a very meaningful honor for my wife, Leslie, and me to have been among the 600 invited thought leaders to attend the White House Conference on Hunger, Health and Nutrition. It also provided a great opportunity for us to share our lived experience with Celiac Disease, a potentially life-threatening food allergy, auto-immune disease and digestive disease, triggered by eating Gluten, and advocate for the labeling of Gluten as a Major Food Allergen on all packed foods in the U.S., just like it is in 85 other countries. Thank you to everyone involved in making the White House Conference a r ..read more
Celiac Journey
4M ago
At Independence Hall in Philadelphia, Jax was honored to give his first personalized Celiac Journey challenge coin to U.S. Senator Chris Coons of Delaware. Our family and Senator Coons had just attended President Joe Biden's Soul of the Nation speech on September 1, 2022, and we were inspired by the President's words, "We, the people, have burning inside each of us the flame of liberty that was lit here at Independence Hall, a flame that lit our way through abolition, the Civil War, Suffrage, the Great Depression, world wars, Civil Rights."
Historically, challenge coins have been an American ..read more
White House Conference on Hunger, Nutrition & Health: Reduce Diet-Related Disease By Labeling Gluten
Celiac Journey
5M ago
In advance of the White House Conference on Hunger, Nutrition, and Health on September 28, 2022 ("White House Conference"), Bari Consulting Group, Celiac Journey and Gluten Free Finds released a comprehensive report which includes their top policy objective that has the potential to dramatically improve nutrition, reduce food insecurity and reduce diet-related disease in the near-term for millions of people in the United States ("Bari Report").
Informing the National Strategy of the White House Conference
The intention of the Bari Report is to inform the National Strategy that will be announc ..read more
FDA Should Follow the 2021 FAO/WHO Expert Consultation & More than 1,000 Comments on Labeling Gluten
Celiac Journey
5M ago
“We have been too quiet for too long. There comes a time when you have to say something.
You have to make a little noise. You have to move your feet. This is the time.”
-- Congressman John Lewis (1940-2020), The “Conscience of the Congress”
On April 19, 2022, the FDA published “Evaluating the Public Health Importance of Food Allergens Other Than the Major Food Allergens Listed in the Federal Food, Drug, and Cosmetic Act: Guidance for FDA Staff and Stakeholders – Draft Guidance”, April 19, 2022, Docket number: FDA-2021-N-0553 (“FDA’s Draft Guidance”).[1]
Based on the collective response and fin ..read more
Celiac Journey
9M ago
"You, with your words like knives
And swords and weapons that you use against me...
Calling me out when I'm wounded
You, picking on the weaker man...
I walk with my head down
Trying to block you out, 'cause I'll never impress you
I just wanna feel okay again
I bet you got pushed around
Somebody made you cold
But the cycle ends right now
'Cause you can't lead me down that road
And you don't know what you don't know...
Why you gotta be so mean?"
--Taylor Swift, Mean
https://youtu.be/ueO0ttT33Qk?t=6
As we mark Celiac Disease Awareness Month this May, I want to share a story that happened this pas ..read more
Celiac Journey
11M ago
https://youtu.be/_pZ3hTMM9HI?t=1533
Thank you President Biden for inviting 13 year old Joshua Davis to the State of the Union on March 1, 2022, shining a light on Type 1 Diabetes (T1D) and recognizing the seriousness of another auto-immune disease, including with the high cost of insulin treatments.
It was inspiring for my family to learn how another young boy like my son Jax and his wonderful family have been sharing their unique health story so that our elected leaders and the public can better understand their family's lived experience. President Biden's sense of empathy is one of his great ..read more