Spring Recap: Traveling for Celiac Disease Education and Advocacy

This past spring was jam packed with business travels. There were times when I felt as if my “out of office” auto response would be up forever! So, it’s safe to say that I have good reason for being MIA on the staff blog. Let me backtrack so I can keep everyone in the loop.

Starting in February, Alice and I traveled to Orlando to participate in the American College of Preventive Medicine’s (ACPM) 2012 annual meeting. When we weren’t exhibiting at NFCA’s booth, where we explained the importance of patients not going gluten-free before being tested for celiac disease and clarified that yes, gluten sensitivity is real, we sat in on lectures from leading preventive medicine experts like Dr. Mark Hyman and learned how media outlets determine what news gets covered.

NFCA’s booth at ACPM 2012

After that, it was back to the Northeast for another round of conferences. Cheryl joined me in attending Columbia University’s Intestinal Immune-Based Inflammatory Diseases Symposium where we snacked on fresh rolls from Free Bread Inc. (a personal new favorite!). The Celiac Disease Center at Columbia University continually organizes meetings that are educational and fun, allowing for the providers and patients to mingle. And, of course, it’s always a pleasure catching up with experts like Dr. Jonas Ludvigsson. You can read a recap of Cheryl’s experience and catch an interview I held with Dr. Ludvigsson after we parted ways in March.

Special note: While listening to some of the world’s finest celiac experts discuss topics such as the emergence of non-celiac gluten sensitivity and the role of the PillCam in the diagnosis and management of celiac disease, I learned the exciting news that an abstract from the NFCA was accepted for a poster presentation at the International Meeting on Coeliac Disease, Mastering the Coeliac Condition: From Medicine to Social Sciences and Food Technology. After months collaborating with the Celiac Center at Beth Israel Deaconess Medical Center and the Lankenau Institute for Medical Research on the data collection and analysis of the study “The Use of Disease Symptoms Checklist in Self-Initiated Diagnoses of Celiac Disease and Non-Celiac Gluten Sensitivity,” it was great to hear that our work would be recognized. (And judging from the theme of this post, if you think that my spring travels also involved a trip to Florence, Italy, you are correct. Watch out for my recap later this week).

Our Awareness All-Star fundraiser Jack Simpson and his mom Cheryl Lynne joined us at the DDNC Public Policy Forum.

The very next morning after returning from NYC, I hopped on a train to Washington, DC, to meet up with Alice and participate in the Digestive Disease National Coalition’s (DDNC) 2012 Public Policy Forum. This was my second time joining in the annual meeting where patients, industry representatives, healthcare providers, lawmakers and their legislative staff come together for two days of educational programs, legislative updates and advocacy training. Each year, the Digestive Disease National Coalition (DDNC) briefs participants from around the country on Federal healthcare legislation and policy and provide the opportunity to educate Members of Congress on issues of concern to the digestive disease community. In essence, it provides an opportunity to see the government in action.

This year, our colleagues from The Children’s Hospital of Philadelphia’s Center for Celiac Disease joined the Public Policy Form. It was great to have NFCA Scientific/Medical Advisory Board Member Dr. Ritu Verma and Patricia A. Bierly, CRNP, on hand to share the clinical perspective of celiac disease with legislators.

Stay tuned for more tales from my spring travels, including:

• Mastering the Coeliac Condition: From Medicine to Social Sciences and Food Technology in Florence, Italy
• Arkansas Dietetic Association’s (ArDA) Annual Meeting and Expo and the Long-Term Care Seminar in Little Rock, AR
• Research presentation from graduate student of Emerson College’s Health Communications program in Boston, MA
• 2012 Digestive Disease Week in San Diego, CA

- Kristin

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