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  • Writer's pictureJon Bari
    • Sep 21, 2021
    • 3 min read

At Age 8, Jax Has Recruited 9 Members of Congress to Join the Congressional Celiac Disease Caucus


Legislative Priorities: Funding Research & Labeling Foods

As World News Tonight with David Muir reported on May 19, 2021, Jax has been advocating to attain two primary goals for the 3 million American Celiacs:

  1. increasing Federal funding for Celiac Disease research, and

  2. requiring that Gluten be labeled on all packaged foods in the US, just like it is in 85 countries around the world including in Canada and across Europe.

Jax Speaks & Congress Listens - Go Jax!

Since the World News Tonight story aired, Jax has shared his legislative priorities with various Members of Congress in order to recruit them to join the new Congressional Celiac Disease Caucus. To date, Jax has recruited 9 of the 27 bipartisan members (in bold) from the U.S. House of Representatives to serve on the new Congressional Celiac Caucus (listed in alphabetical order):

Jax is working to recruit every Member of Congress from Pennsylvania to join the Congressional Celiac Caucus.


Background

Shortly after beginning our family's Celiac journey in August 2018, it quickly became apparent to us how much advocacy work was needed on Capitol Hill to change the trajectory of the lives of 3 million Americans with Celiac, including for our then 5 year old son Jax. Jax quickly learned from us how to advocate and share his pediatric perspective with Members of Congress including at a Congressional Briefing that we hosted with Rep Dwight Evans and Rep. John Joyce, MD. In his own words, Jax has asked for help and told appropriators, lawmakers and government officials that "Celiac is no joke!"


Bipartisan Leadership

We are thankful to Rep. Betty McCollum (D, MN-4) and Rep. Steve Stivers (R, OH-15) for starting the Celiac Caucus in 2021. By way of background, Rep. McCollum has Celiac Disease and chairs the Celiac Caucus, and Rep. Stivers' daughter has Celiac so this Caucus was formed from the keen insight of their personal lived experiences.

“Celiac Disease affects millions of people across America, and we know far too little about this autoimmune disorder. I am excited to chair this bipartisan caucus to work together in Congress to shed light on this growing problem.” --Rep. Betty McCollum

Even though Rep. Stivers left Congress to become the President and CEO of the Ohio Chamber of Commerce on May 16, 2021, we applaud Rep. Stivers for his dedication to the Celiac community, including sharing that his young daughter Sarah, has Celiac. We hope that his video is helpful to other Members of Congress who are considering joining.

Celiac is A Bipartisan Issue

Celiac is not a Democrat or Republican issue, not a liberal or conservative cause - it is an American problem that needs leadership!

"Thank you for reaching out and sharing your son Jax's story. He’s a real inspiration and I’m sure there are some K street firms here in DC that could stand to learn a few things about advocacy from him! The Congressman will be happy to join the caucus." -- Rep. Matt Brennan, Chief of Staff, Representative Glenn "GT" Thompson (PA-15)

What is a Congressional Caucus?

A congressional caucus is a group of members of the United States Congress who meet to pursue common legislative objectives. Formally, caucuses are formed as Congressional Member Organizations (CMOs) through the United States House of Representatives and governed under the rules of that chamber. Sometimes groups are called caucuses, but other similar groups may be referred to as coalitions, study groups, task forces, or working groups.


The Whole of Government

In addition to Jax's two legislative priorities, the Celiac Caucus can improve the lives of those with Celiac by using a "Whole of Government" approach and working on issues with different government agencies including the National Institutes of Health, Health and Human Services, Food and Drug Administration, Centers for Disease Control and Prevention, Department of Education, Department of Defense, etc.


Join Jax and Reach Out to Your Member of Congress

If you want to learn from Jax how to approach your Member of Congress, please email us at info@CeliacJourney.com . While it is great for everyone to reach out to Congress, it is especially powerful for Congress to see the pediatric faces, hear the pediatric voices and read the pediatric words of Celiac Disease. We are all in this together!





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