Call to Action: Submit Comments to FDA to Support Citizen Petition to Label Gluten as Major Allergen
Celiac Journey
by Jon Bari
4M ago
Make Your Voice Heard - Submit Your Comments to the FDA to Support Jax's Citizen Petition to Require the Labeling of Gluten on All Food Products ICYMI: In honor of the first anniversary of the White House Conference on Hunger, Nutrition, and Health, 10-year-old Jax Bari submitted a Citizen Petition to the FDA to require the labeling of Gluten on all food packages in the U.S., just like Gluten is required to be declared on food labels in 87 other countries worldwide. This Citizen Petition is a response to President Biden's nationwide call-to-action with the "White House Challenge to End Hunger ..read more
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10-Year-Old Files Citizen Petition with the FDA to Label Gluten as a Major Food Allergen in the U.S.
Celiac Journey
by Jon Bari
5M ago
In honor of National Celiac Awareness Day on September 13th and the upcoming first anniversary of the White House Conference on Hunger, Nutrition, and Health on September 28th, Jax Bari, age 10, has filed a Citizen Petition with Secretary Xavier Becerra of the Department of Health and Human Services and FDA Commissioner Robert M. Califf, M.D. to label Gluten as a Major Food Allergen. Background Labeling Gluten (Wheat, Barley, Rye and Oats) as a Major Food Allergen on all packaged foods in the U.S., like it is in more than 85 other countries around the world, will better protect 3.3 million Am ..read more
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Jax Bari is #AmericaStrong on World News Tonight with David Muir: White House Meeting
Celiac Journey
by Jon Bari
8M ago
https://www.youtube.com/watch?v=osAY6RyI2es "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 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 Whit ..read more
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CBS News Reports, "10-Year-Old with Celiac on Mission to Get Better Food Labeling"
Celiac Journey
by Jon Bari
8M ago
https://www.youtube.com/watch?v=QETFU7p5zxo On May 31, 2023, CBS Philadelphia Health Reporter Stephanie Stahl reported on Jax's Celiac Journey, "10-Year-Old with Celiac on Mission to Get Better Food Labeling." We are grateful to Stephanie and CBS Philadelphia for reporting about Jax's efforts to get Gluten labeled as a Major Food Allergen on all packaged foods in the U.S., Jax's meeting with President Biden, and his work with Pennsylvania State Senator Amanda Cappelletti to secure a $100,000 donation to Children's Hospital of Philadelphia's Center for Celiac Disease from the Pennsylvania Depar ..read more
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Celebrating Highlights of Jax Bari's Health Equity Advocacy During Celiac Disease Awareness Month
Celiac Journey
by Jon Bari
9M ago
In reflecting on the progress of our family's patient advocacy organization, I am reminded of Laurene Powell Jobs' Commencement Address to the Class of 2021 at the University of Pennsylvania, "Change in ourselves and change in the world happens similarly. It comes slowly, slowly, and then all at once. What matters is your readiness for the moment of revelation, of challenge, of opportunity. We have to be prepared to walk through the door when it opens, or, by our own power and purpose, to open it ourselves. And sometimes we need to tear down walls, the ones within and the ones without." Grate ..read more
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Gluten Free & Vegan Are Not The Same: Let's Stop Conflating a Food Allergy with a Food Preference
Celiac Journey
by Jon Bari
10M ago
My wife and I were honored to attend the White House Conference on Hunger, Nutrition, and Health ("White House Conference") last September and share our lived experience with Jax's diet-related disease. However, I would be remiss if I did not call out the organizers and food service providers for the White House Conference lunch who conflated a food allergy with a food preference. There is an irony to this story with the lunch provided considering the focus on hunger, nutrition, and health at the White House Conference. Unfortunately though, this blind spot for the medically required dietary ..read more
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Readout of Meeting with Office of HHS Secretary Xavier Becerra: Labeling Gluten is Actionable Now
Celiac Journey
by Jon Bari
10M ago
On April 17, 2023, the Bari family traveled to Washington, D.C. and shared their lived experience and research on why Gluten needs to be labeled on all packaged foods in the U.S., just like it is 85 countries worldwide. As a follow up to our meetings with the White House Domestic Policy Council staff and senior FDA leadership, we presented to staff from the Immediate Office of U.S. Department of Health and Human Services ("HHS") Secretary Xavier Becerra. We were honored to have been joined again at the HHS meeting by Dr. Virginia Stallings, a board-certified nutrition pediatrician, Professor ..read more
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White House Easter Egg Roll Fell Short in Accommodating Kids with Celiac and Other Food Allergies
Celiac Journey
by Jon Bari
10M ago
Our family had a terrific time at the 2023 White House Easter Egg Roll! The weather was perfect! It was cool to walk by the Oval Office and hang out on the South Lawn of the White House. Thank you President Joe Biden and First Lady Dr. Jill Biden for hosting the traditional Easter Egg Roll, Easter Egg Hunt, various "EGGucation" activities and character appearances. The Washington Post reported that the White House celebrated inclusivity and accommodated children with some disabilities at the Easter Egg Roll. However, those efforts fell short for kids with disabilities including Celiac Disease ..read more
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Let's Stop Gaslighting Gluten as a Second Class Food Allergen & Celiac as Not a Food Allergy!
Celiac Journey
by Jon Bari
1y ago
"What’s in a name? That which we call a rose by any other name would smell just as sweet." -- William Shakespeare Shakespeare used this famous "What’s in a name" line in Romeo and Juliet to convey that the naming of things is irrelevant. However, I disagree with that assertion when it comes to the terms "food allergy" and moreover "food allergen." Is Celiac Disease a food allergy, auto-immune disease and/or digestive disease? Spoiler alert - it's all three. However, with respect to the consumer protection needs of the Celiac community with food labeling, Celiac Disease is a food allergy and G ..read more
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When Jax Bari Helped to Change the White House's National Strategy Language on Disabilities
Celiac Journey
by Jon Bari
1y ago
Overview This is a story about how 9 year old Jax Bari, a national advocate for Celiac Disease, informed the White House about avoiding euphemisms when referring to people with disabilities. Jax is a Celiac changemaker. Based on his lived experience with a diet-related disease that impacts 3.3 million American Celiacs, Jax asked the White House to revise its language in its National Strategy from "people who are differently-abled" to "people with disabilities." The White House listened! Next up: declaring Gluten as a Major Food Allergen on all food products! Since the historic White House Conf ..read more
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