"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-threatening food allergy and auto-immune disease triggered by eating Gluten. Jax personally asked for the President's help to label Gluten as a Major Food Allergen, just like Gluten is labeled in 85 other countries, to better protect 3.3 million American Celiacs.
It was amazing to watch Jax share his lived experience and talk food policy with the President of the United States, including presenting Celiac Journey's one sheeter policy objective from the White House Conference on Hunger, Nutrition and Health, which the President took the time to read. Picking up on the President's remarks earlier in the evening, Jax shared that insulin is to Diabetics as Gluten Free food is to Celiacs. Senator Bob Casey's smile was beaming as he watched Jax personally advocate to the President.
The President saw that Jax was wearing a Penn shirt and asked Jax if he wants to go to the University of Pennsylvania. When Jax said "maybe" (he's only in 4th grade so college is a ways off), President Biden told him that his children and granddaughter went to Penn.
Then Jax and President Biden exchanged Challenge Coins, and the President asked for Jax's number to follow up. Jax told the President "I don't have a phone number, but I can give you my dad's." It was very cool!
I also shared with President Biden that my wife and I had attended the White House Conference on Hunger, Nutrition and Health, and how his opening remarks at the Conference rang true for us - "If you look at your child and you can't feed your child, what the hell else matters?" I explained that we have unfortunately lived this food insecurity experience that he spoke of in the absence of required labeling of Gluten as a Major Food Allergen, especially eating out of the house, and our son Jax getting violently ill after being Glutened (accidentally ingesting Gluten).
Thanks to John and Gisele Fetterman for a great night! Thanks John for publicly leaning into your personal health challenges with your stroke recovery in such an authentic manner and leading by example for Jax and millions of others who have health challenges. Earlier in the evening, Jax raised his hand when John spoke and asked the audience, "who has had a major health challenge?". Thanks Gisele for your support and kind introduction to the President!
Earlier in the evening, Jax also asked for help from others in attendance including Senator Casey and Congressman Brendan Boyle.
"I admire your courage and the incredible work you've done to help the millions of Americans like you who live with Celiac disease. The story about you on the news was terrific, and I am so impressed that you met with Members of the United States Congress to talk about ways to further improve the lives of people with Celiac disease... Young Americans like you are the future of our Nation. When you make your voice heard, adults listen. I look forward to seeing where your future takes you and the positive changes you inspire for people with Celiac disease." -- President Joe Biden to Jax Bari, 8/17/21
We are looking forward to following up with the White House. In channeling our inner Taylor Swift with The Story of Us - "Next Chapter!"
Celiac Journey's Resources for the White House Conference on Hunger, Nutrition and Health
Celiac Journey - One Sheeter on the White House Conference on Hunger, Nutrition and Health
Press Release - Bari Consulting Group, Celiac Journey and Gluten Free Finds on the White House Conference on Hunger, Nutrition and Health
Full Report - Bari Consulting Group, Celiac Journey & Gluten Free Finds, "Sharing Our Lived Experience with Celiac Disease - Comments on '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,' August 16, 2022." FDA Comment ID: FDA-2021-N-0553-1584, FDA Tracking Number l6w-qe9m-4tjy, August 16, 2022.
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