In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.
Celiac.com 05/25/2004 - On April 27, 2004, for the first time, individuals with Celiac Disease testified before a Congressional Committee.
Lisa Murphy, and her son, Colin, represented the ACTF before the House Appropriations Subcommittee on Labor, HHS, and Education. They did an outstanding job outlining what celiac disease is, who it affects, the need for NIDDK to develop a research plan for CD, as well as the need for greater physician and patient education (The Murphy family, of Chappaqua, NY, was featured in a Feb. 2004 Parents magazine article about CD).
The Labor-HHS Subcommittee determines how much money NIH receives each year. Having individuals with Celiac Disease provide information about the disease is critical to securing funding for research.
After hearing the testimony, Subcommittee Chairman, Ralph Regula (R-OH), asked if food labels were a problem for celiacs. Not missing a beat, Lisa offered an emphatic, Yes, then highlighted problems she has encountered. Rep. Nita Lowey (D-NY), sponsor of H.R. 3684, the Food Allergen Labeling and Consumer Protection Act, and member of the Subcommittee, explained the bill was drafted to help individuals like Lisa, and Colin.
The celiac community has waited a very long time for this incredible opportunity.
The American Celiac Task Force is grateful to the entire Murphy family for graciously agreeing toshare their story, and for helping to make this historic day possible.
Co-Chair, Legislative Project
American Celiac Task Force