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  • Writer's pictureJon Bari

Jax Bari Applauds President Biden and Joshua Davis for Shining a National Light on Type 1 Diabetes

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, especially considering 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 greatest strengths, and it showed at the State of the Union.

"I spoke with Joshua's mom. Imagine what it's like to look at your child who needs insulin to stay healthy and have no idea how in God's name you're going to be able to pay for it -- what it does to your family, but what it does to your dignity, your ability to look your child in the eye, to be the parent you expect yourself to be. I really mean it. Think about that. That's what I think about. You know, yesterday -Joshua is here tonight, but yesterday was his birthday. Happy birthday, buddy, by the way." -- President Joe Biden

In covering the State of the Union story with Joshua Davis, the Washington Post's headline captured the essence of this uplifting story, "A Virginia boy's battle with diabetes has shaped his life -- and sent him to the White House." In that spirit, it was so amazing to see how another young boy has been advocating on behalf of the 1.9 million Americans who have Type 1 Diabetes, including himself and his father, Brian Davis.

In the past few years, Jax has learned a lot about empathy and advocacy. Jax has also seen first hand how kids really can make a difference, including in Washington, DC, in making their voices heard and asking for help from elected leaders, even when they are still too young to vote. After Jax's story on Celiac Disease was reported on World News Tonight with David Muir in May 2021, President Biden wrote to Jax,

"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."

The Connection Between Celiac & Type 1 Diabetes

While Jax does not have T1D, we have learned that there is a significantly higher prevalence of Celiac Disease in Diabetes patients. According to the University of Chicago, the estimated prevalence of Celiac Disease in patients with Type 1 Diabetes is approximately 6%.

The Back Story - All Politics is Local

After seeing Joshua at the State of the Union as the guest of First Lady Dr. Jill Biden, Jax was curious how Joshua got that amazing invitation.

On February 10, 2022, Joshua Davis (who was then 12 years old) introduced President Joe Biden in a speech about prescription drug costs at Germanna Community College in Culpeper, Virginia. As they say, all politics is local. To that end, watch Representative Abigail Spanberger (D, VA-7) introduce Joshua and his mom, Shannon Davis. Then really listen to the brave words from Shannon and Joshua. Show this to your kids -- it may inspire them as much as it has inspired Jax.

"If we all display the leadership and the maturity of Joshua, I think we'd be able to tackle way more challenges than just the rising cost of prescription drugs. I am proud to know the Davis family, and I am proud to know that they are using their story to bring much-needed attention to out-of-pocket costs and how they are impacting them and their neighbors." -- Representative Abigail Spanberger

Out of the Mouth of Babes

We need more kids like Joshua and Jax telling their auto-immune disease health stories to our elected leaders. Thank you Joshua for motivating Jax to continue to tell his Celiac story. Here's hoping that Jax and Joshua can one day tell their stories together on Capitol Hill!

Jax just reminded me of President Biden's line in his letter to Jax from August 17, 2021, "When you make your voice heard, adults listen," and Jax renewed his goal that he wants President Joe Biden, "the most powerful adult in the world to listen" to his Celiac journey in person, just like President Biden listened to Joshua's T1D journey in person. Out of the mouths of babes...

Joshua Davis introducing President Joe Biden, February 10, 2022, Germanna Community College in Culpeper, Virginia

1 Comment

Marcia Stewart
Marcia Stewart
Mar 23, 2022

With my amyotrophic lateral sclerosis (ALS), the first thing that happened almost 2 years ago now, was speaking as if I were drunk. I wasn't. I initially did improve speech (articulating clearly but slow) but now I can no longer speak in an acceptable way. Then, a year later eating became problematic, I was biting my tongue and lips, and chewing became weak and less controlled. Soon after that some fingers started to fail me and things would drop out of my hands. Somewhere at that time bulbar ALS was diagnosed. The Rilutek (riluzole) did very little to help me. The medical team did even less. My decline was rapid and devastating.. We tried every shot available but nothing was…

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