The Value of Authentic Storytelling with Jon & Jax Bari

Intro: Welcome to The Daily Bolster. Each day, we welcome transformational executives to share their real- world experiences and practical advice about scaling yourself, your team, and your business.

Matt Blumberg: Welcome to The Daily Bolster. I'm Matt Blumberg, Co- founder and CEO of Bolster, and I'm here today with Jon and Jax Berry, who are the Co- founders of a nonprofit called Celiac Journey. Without question, Jax Bari, who is a fifth grader at the William Penn Charter School in Philadelphia and is a national advocate for celiac disease, without question is the youngest CEO that we have had here on The Daily Bolster. Jon has over three decades of professional experience in marketing and technology, which is how he and I got acquainted more than 20 years ago. Jon and Jax, it's great to have you here today.

Jax Bari: Thank you so much for having us, Matt.

Jon Bari: Yeah. We're super excited to share our story.

Matt Blumberg: Yeah. My pleasure. One of the things that's so impressive about the work that you've done is how effectively you use what I would call and what I think you would call authentic storytelling to your advantage. You're not just running an organization, you're running a nonprofit, an advocacy organization. You're trying to raise awareness for an issue. You're trying to change public policy. As much as any for- profit CEOs, you're really trying to move the needle on some pretty difficult things. My question to you is, talk about the value of authentic storytelling. Maybe give our audience a few examples of things that you've done and how they've helped.

Jon Bari: Jax, would you like to start?

Jax Bari: Yeah. When I was eight in second grade, well, we had a persuasive letter- writing project. I chose to write to David Muir of our World News Tonight, and I asked him to report on a story about kids who have celiac disease. I invited some of my friends with Celiac from Maryland, Virginia, Colorado, and we asked him to do it in May, which is Celiac Awareness Month. It was really cool having my story shown in front of around 10 million people.

Matt Blumberg: That's amazing. Presumably, one of the reasons the journalist was excited about telling your story was, it was you all telling your lived experience.

Jon Bari: It really was. It was sharing that pediatric perspective on the challenges of having a food allergy that's triggered by eating gluten. Jax did an amazing job, and we were quite surprised with the turnout and the follow- up that we had after that report aired.

Matt Blumberg: All I have to say is, when my kids were eight, they wrote a persuasive essay about why we should get a dog. I think you are well, well ahead of what most eight- year- olds, now 10- year- olds, do. Can you give me another example? I understand you went to Washington and had some pretty impressive meetings for someone at your age.

Jax Bari: Yeah. It really all started with that, with David Muir. And then, when I was nine, I met the president, and it was super cool. He thought I just wanted a photo or something like that. But no, I wanted to talk food policy with him and asked him to help me get gluten labeled. He asked for my phone number and I said, " I don't have one, but I can give you my dad's." And then, two weeks later, we were at The White House.

Matt Blumberg: Amazing. What was the meeting like at the White House?

Jax Bari: We were meeting with the Domestic Policy Council about getting gluten labeled as a major food allergen. It was really cool.

Matt Blumberg: I bet it was.

Jon Bari: It's phenomenal when kids share their perspective and when kids actually ask for help. Here, it was Jax informing them that 87 other countries around the world labeled gluten on all packaged foods and yet, the United States doesn't. They looked at Jax and they're like, " Wow, this is an incredible lived experience and a story there." We shared the David Muir video and all these other stats and the like, and I think it was well- received. We haven't achieved our goal yet, but we're working towards it.

Matt Blumberg: Do you have an ongoing dialogue with, I assume this is the FDA, right?

Jon Bari: Ongoing dialogues with the FDA and then HHS, which is the agency overseeing the FDA and the Domestic Policy Council. And trying to move all those people forward and align them with our interests of protecting-

Matt Blumberg: Do you have a sense of whether or not you will be able to get them to start requiring gluten labels, or how long it will take?

Jon Bari: The science is there. The World Health Organization and the Food and Agriculture Organization of the UN have come up with their recommendation that gluten should be labeled, and that's why 87 other countries do it. The multinationals which are selling around the world do it in all of the other countries. This is something that has been well- documented and well- implemented around the world, and we think it could happen here. We have a citizen petition right now pending in front of the FDA, and we've had some great experts from industry and science and the like weigh in on this. We think we're making progress, but the FDA moves very, very slowly.

Matt Blumberg: Is there someone arguing the other side of it? Do you need to use the power of your storytelling to move someone who is opposed to this, as opposed to just educating someone who might not have thought about it?

Jon Bari: It's a great question, and it's one of those things that no one has been able to articulate a solid reason why we shouldn't. The FDA has said, " Well, celiacs don't go into anaphylactic shock after consuming the food protein." Well, that may be true, but celiacs do suffer intestinal damage and run the risk of cancer and heart disease and other effects. It might not be short- term death, but it is a potentially life- threatening food allergen with gluten. And we're working to move them past some of those obstacles.

Matt Blumberg: Well, it's a really inspiring mission that you have. It has been great talking to you about the power of authentic storytelling. I can see how much of a difference it's making in your organization at the Celiac Journey. So, Jon and Jax Bari, thank you for joining me today.

Jon Bari: Thank you so much for having us.

Jax Bari: Thank you. Bye.