Councilmember Allan Domb’s resolution raises awareness about Celiac Disease and the efforts of eight-year-old Philadelphian Jax Bari for shining a national spotlight on Celiac
PHILADELPHIA – City Councilmember Allan Domb (At Large) today introduced a resolution that recognizes the month of May as Celiac Disease Awareness Month in Philadelphia, joining the national campaign that advocates for increased federal funding for Celiac research and federally mandated labeling of Gluten as a top food allergen on all packaged foods in the U.S., just like it is in Europe and Canada.
Celiac Disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten can lead to more than 200 debilitating symptoms and damage in the small intestine. According to the Celiac Disease Foundation, the disease is estimated to impact 1 in 100 people worldwide, and about three million Americans.
“It’s important for Philadelphia to bring a strong voice to the national stage and help raise awareness about Celiac Disease,” said Councilmember Domb. “There is a great need for federal funding from the NIH to support research and mandating labeling of gluten on all packaged foods. Even the smallest amount of gluten can be poison for those who suffer with Celiac Disease.”
Councilman Domb’s resolution also recognizes eight-year-old Philadelphian Jax Bari for shining a national light on Celiac Disease on ABC’s World News Tonight with David Muir on May 19, 2021.
As one of his projects in second grade at Penn Charter, Bari has been writing persuasive letters, including to President Joe Biden and ABC’s David Muir and said, “Eating without fear is our hope. Food insecurity for Celiacs happens everyday. I recently wrote to President Biden asking for help and wanting to meet with him to share my ideas. Can you help tell the Celiac story this May which is Celiac Awareness Month?” Muir was persuaded by Bari’s letter.
Bari’s goals are to get congress to increase federal funding for Celiac Disease research to find more treatment options and cure and to mandate that gluten be labeled as a top food allergen on all packaged foods in the U.S., just like it is in Europe and Canada.
Right now, a strict gluten free diet for all life is the only treatment for Celiac Disease, which is insufficient since gluten is found in 80 percent of foods and there is a constant risk of cross contamination.
Celiac Disease research is severely underfunded in proportion to the scale of the disease, the treatment burden and lack of treatment options. According to an analysis published in 2017 by the American Gastroenterological Association titled, “Disparities Among Gastrointestinal Disorders in Research Funding from the National Institutes of Health,” Celiac Disease has received the lowest amount of NIH funding over a 5-year period. This funding averaged $3 million annually, or $1.00 for every person with Celiac Disease. Celiac Disease research also received the lowest amount of NIH grants in that study.
In addition to appearing on the “America Strong” story on World News Tonight in May, Jax co-hosted a bipartisan Congressional Briefing on Capitol Hill on NIH funding of Celiac research in January 2020 including with his family, Representative Dwight Evans and Representative John Joyce, M.D., and his treating physician Dr. Arun Singh, Director, Children’s Hospital of Philadelphia’s Center for Celiac Disease. Jax has also helped recruit members for the new bipartisan Congressional Celiac Caucus with Congressional leaders including Representative Madeleine Dean, Representative Joyce and Representative Mary Gay Scanlon.
“City Council supports these important efforts and encourages Jax to continue his role as a young leader in the fight for those who have Celiac Disease and their loved ones,” said Councilmember Domb.
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