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 Department of Health for Celiac research.
Jax told Stephanie what its like to get Glutened and how Celiac sucks! Jax also told Stephanie about how he is working to make the U.S. a safer and more inclusive place for 3.3 million American Celiacs.
Transcript
Natasha Brown: Well, a big donation today at Children's Hospital of Philadelphia (CHOP) to fund more research for Celiac Disease.
Siafa Lewis: That's right. CBS Philadelphia Health Reporter Stephanie Stahl was there for the all-important announcement.
Stephanie Stahl: Big announcement today at CHOP. This research is aimed at finding a treatment for Celiac Disease, and one Penn Valley family is also working to get better food labeling. He's only 10, but Jax Bari is on a very grown-up mission, meeting with President Biden and other leaders in his fight against Celiac Disease.
Jax Bari: It can be really hard sometimes!
Stephanie Stahl: Jax is among 3 million Americans with a potentially deadly food allergy to Gluten caused by an autoimmune disease. The fourth grader was incapacitated for days recently after accidentally eating something with Gluten.
Jax Bari: It was awful!
Leslie Bari: You're just thinking about every next meal, every bite of food that goes into his mouth. It's really all consuming!
Stephanie Stahl: With no treatment for Celiac, Jax and his parents hope this $100,000 donation helps with research at CHOP's Celiac Center.
Amanda Cappelletti: I'm proud that we were able to secure this grant from the Pennsylvania Department of Health to further the work that CHOP is doing to ease the burden of Celiac Disease.
Stephanie Stahl Gluten is found in Wheat, Rye, Oats, and Barley, and it can be difficult to avoid.
Dr. Arun Singh: We need new options. We need new medication options, and we need new treatments, so that we can hopefully find a cure for Celiac Disease.
Stephanie Stahl: Celiac advocates also want the FDA to require Gluten labeling on all food packaging.
Leslie Bari: And so we're, you know, trying to decipher food labels, and we can spend hours in the grocery store trying to figure out if something actually has Gluten in or not.
Stephanie Stahl: They say food labeling would eliminate the guessing game of eating. That comes with fear because of the lack of treatments.
Jon Bari: We have a vision that Jax is among the first generation, or is the first generation, that will have a treatment option other than a Gluten Free diet!
Stephanie Stahl: For Jax, it's one simple wish.
Jax Bari: Eating without fear is our hope!
Stephanie Stahl: Now, the Gluten Free label you see on some food items is voluntary. The Celiac community wants that to be mandatory and that each of the Gluten grains be listed on packaging. We have a lot more information for you at cbsphiladelphia.com. Jax is a brave young man, I must tell you. And he's got to be careful about what he eats for sure.
Siafa Lewis: So sad.
Natasha Brown: Thank you, Steph.
