When Dr. Stefano Guandalini came to the United States in the early 1990’s, he was shocked at how little awareness, education and research existed in the area of celiac disease. As an internationally respected expert in the field, Dr. Guandalini knew that the prevalence of celiac disease in the United States would be expected to be very similar to that of his own country, yet his new pediatric practice had few celiac patients.
He wanted to do more. He knew he must do more to diagnose children and families who were dealing with undiagnosed celiac disease and its consequences. He began work to start a center, located at the University of Chicago, with a primary focus on celiac disease research and education.
In 2001, Robin Steans and Leonard Gail joined with Dr. Guandalini to form the University of Chicago Celiac Disease Program. Their daughter Leah was diagnosed with celiac disease, and through their experience, they learned how many families did not have access to information and resources that would lead to a diagnosis and a sound gluten-free diet for themselves or a loved one. Most importantly, the Steans-Gail family was concerned about the limited knowledge of the medical community and the lack of research focusing on celiac disease that could truly address the critical issues facing families.
Taking a key leadership role, Robin Steans mobilized an advisory board that formed the organization and helped shape its strategic direction, and built the foundation of a program that at its core still has a mission to “raise diagnosis rates for celiac disease and to meet the critical needs of people affected by this condition through education, research and advocacy.” Serving as our board chair for our first three years, Robin dedicated countless hours to building our organization. We would not be the organization we are today without Robin's invaluable contributions.
From the beginning, our advisory board has represented a wide swath of the celiac community, engaging people with celiac disease and their families, as well as involving medical professionals, members of the local support group, and businesspeople with a special passion for celiac disease awareness. This dynamic and talented group engages the organization in a broad range of activities and focuses the mission on a strategic outcome, one that differentiates this organization from any other.
The University of Chicago Celiac Disease Program’s Advisory Board continues to partner with Dr. Guandalini to lead the organization and ensure that we remain true to our mission to meet those critical needs, to raise diagnosis rates, and to ensure, through research that those at risk for celiac disease have more to hope for in the future. We are grateful for their dedication and leadership.
UCCDP 2007 Advisory Board
Mark De Meo, MD Rush University Medical Center
Lara Field, MS, RD University of Chicago Medical Center
Bana Jabri, MD, PhD University of Chicago Medical Center
Kim Koeller, Gluten-Free Passport
Margaret Mochel, RN
Sara Star Nussbaum, MD
David Rubin, MD University of Chicago Medical Center
Carol Semrad, MD, University of Chicago Medical Center
Peggy Wagener, Living Without
Wendy Weil, DPM