We want to thank Pennsylvania Governor Tom Wolf for his Proclamation recognizing 8 year old Jax Bari's advocacy efforts to help millions of Americans with Celiac Disease!
"To: Jax Bari It is my pleasure to join with your friends and family in recognition of your monumental achievements in raising awareness for Celiac Disease. Pennsylvania is shaped and strengthened by the character and leadership of extraordinary individuals like you. Even at such a young age, you have inspired countless individuals to speak out about Celiac Disease and raise awareness for those affected. I thank you for your contributions to the commonwealth as we work to improve the lives of all Pennsylvanians. It is my hope that you reflect with great pride on your accomplishments and I am certain that you will continue to represent Pennsylvania with great honor for many years to come. As Governor, and on behalf of all the citizens of the Commonwealth of Pennsylvania, I commend you for your efforts in raising awareness for Celiac Disease. Please accept my best wishes for continued success." -- Tom Wolf, Governor
We look forward to working with Governor Wolf and the Pennsylvania General Assembly on ways to improve the lives of the approximate 129,000 Pennsylvanians with Celiac Disease, including Jax.
For example, we believe that with the November 15, 2021 passage of the Infrastructure Investment and Jobs Act, it is time to reimagine equitable infrastructure so that every rest stop along the Pennsylvania Turnpike and every airport in Pennsylvania offer Celiac safe Gluten Free food options. As Jax wrote to Secretary Pete, "Eating without fear is our hope. Food insecurity happens everyday for Celiacs like me, especially when we travel. There is little to no safe Gluten Free food served on airplanes, at airports and at highway rest stops. That's like not having an ADA bathroom. Let's meet so I can help you reimagine equitable infrastructure."
We also want to work with Governor Wolf on pediatric testing so that "silent Celiac" (without symptoms) can be caught early on in children's lives so that damage to the small intestine can be mitigated as much as possible.
When Jax was diagnosed at age 5 with Celiac at Children's Hospital of Philadelphia, his endoscopy revealed Marsh 3 level (significant) damage to his small intestine which caused anemia and inhibited him from absorbing proper nutrients for growth and development. To this day, we do not know the full extent of the short- and long-term damage to Jax's health from Celiac Disease, especially since he risks additional Gluten exposure with every bite of food.
There is currently no treatment or cure, even in the event of accidental ingestion of Gluten. That is why we also look forward to working with Governor Wolf in supporting our efforts to require that Gluten be labeled on all packaged foods in the US, just like it is in Canada and across Europe.
We also need Pennsylvania to support biomedical research at Children's Hospital of Philadelphia, Penn Medicine, , and University of Pittsburgh Medical Center (UPMC).