Philadelphia, PA – May 31, 2023 – Today, on the last day of Celiac Awareness Month, Senator Amanda M. Cappelletti (D-17, Montgomery/Delaware) presented a state grant to the Children’s Hospital of Philadelphia (CHOP) to fund Celiac Disease Research. As an attorney with her master’s in public health, Senator Cappelletti has prioritized public health in her work in the legislature. Securing this grant is just another example of her fight to ensure that people across Pennsylvania have access to the care they need and the treatments they deserve when facing a health challenge.
Jax Bari, a 10-year-old advocate and constituent of Senator Cappelletti’s District, and his family came to Senator Cappelletti to share Jax’s experience living with Celiac. Not only has his diagnosis changed his lifestyle and limited his choices at mealtimes, his experience with Celiac has been a catalyst for his family’s advocacy journey. His Dad, Jonathan Bari, founded of Celiac Journey, an organization which advocates to require Gluten be labeled as a Major Food Allergen on all packaged foods and to increase government funding to find treatment options and find a cure. Jax’s Mom, Leslie Bari, founded Gluten Free Finds (@GlutenFreeFinds_PA), a social media handle that shares gluten free products and tips for traveling with a family member who lives with Celiac.
According to the Celiac Disease Foundation, Celiac Disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to impact 1 in 100 people worldwide and about 3 million Americans, including about 129,000 Pennsylvanians. Researchers are finding that Celiac Disease prevalence is doubling approximately every 15 years, making it a public health epidemic. Gluten ingestion for people with Celiac causes permanent immunological scarring, doubles the risk of heart disease, and acts as a carcinogen.
“I’m encouraged that we were able to secure this grant for CHOP’s vital research. Celiac disease impacts thousands of Pennsylvanians. At this time there is no cure; affected individuals are simply told to avoid gluten. The more we know about the disease, the better equipped our medical professionals will be to guide families through this challenging diagnosis,” said Senator Cappelletti, a member of the Health and Human Services Committee in the Senate. “Many people can enjoy food without considering whether they are consuming gluten, while people who live with Celiac must be conscious of every food product they consume. I hope this research leads to new discoveries that can help those living with Celiac.”
After an application process, The Center for Celiac Disease at CHOP was awarded this research grant through the Pennsylvania Department of Health, which will fund a project where their research team will conduct experiments to test the effect of external factors on autoimmune disease, including gluten and inflammatory mediators which will help researchers gain insight of future diagnostic and therapeutic targets.
“Our study – The Celiac Precision Medicine Study – which is going to get start-up funds, with the support of Senator Cappelletti, is going to make a big step in advancing our knowledge of immunology, of the intestinal self-function, and identify genomic links so we can actually pinpoint drug targets moving forward,” said Dr. Arunjot Singh, attending physician in the General Diagnostic Gastroenterology (GI) Program and Co-Director of the Center for Celiac Disease at Children’s Hospital of Philadelphia. “I want to thank Senator Cappelletti and the Pennsylvania Department of Health for their partnership and awarding this grant as we work together to improve children’s health and livelihoods.”
Senator Cappelletti has also worked with the Bari Family to increase Celiac Awareness in Harrisburg, hosting a Meet and Greet in September of 2021, where members of the General Assembly from both sides of the aisle came to meet Jax and learn more about his experience living with Celiac and his legislative priorities. Senator Cappelletti recognized Jax as her guest on the floor of the Senate, highlighting the advocacy work he has done in Washington D.C. Jax has been advocating to attain two primary goals for the Celiac community:
- increasing State and Federal funding for Celiac Disease research, and w
- requiring that Gluten be labeled on all packaged foods in the U.S., just like it is in 62 countries around the world including in Canada and across Europe.
At today’s grant presentation, Jax spoke about his recent experience when he was “Glutened” meaning he was accidentally exposed to Gluten. “If I get sick, there is no treatment,” said Jax, “Last month, I got Glutened and it was awful. I was so sick.” He had to miss school and experienced vomiting for two days because of the exposure to Gluten. Jax shared, “eating without fear is our hope.” Watch the grant presentation on Facebook here. Follow Senator Cappelletti on Twitter, Facebook, and Instagram to keep up with the latest news coming out of the office.