Gluten-Free Community Unites at National Conference and Gluten-Free EXPO
Celiac Disease Foundation (CDF) is pleased to announce that over 3,200 people – patients, family members, caregivers, healthcare professionals, researchers, biopharmaceutical and diagnostic company representatives, and gluten-free foodies – attended CDF’s annual National Conference & Gluten-Free EXPO on April 30-May 1 in Pasadena. The April 30 Conference focused on medical information and research updates on celiac disease, one of the world’s most prevalent and under diagnosed autoimmune diseases. The EXPO on April 30 and May 1 celebrated food options now available for people with celiac disease, gluten sensitivity, and others who seek benefits from the gluten-free diet. For many of the Conference attendees, this was the first time they were surrounded by a community of people living with celiac disease or gluten sensitivity.
“Celiac Disease Foundation is dedicated to raising awareness and increasing education among the public and healthcare professionals about the importance of screening and treatment for celiac disease and gluten sensitivity,” stated Marilyn G. Geller, Chief Executive Officer of Celiac Disease Foundation. The April 30 National Conference featured world renowned experts, including Peter H. R. Green, MD, of the Celiac Disease Center at Columbia University, Rory Jones, MS, of Barnard College, Mi-Young Ryee, PhD, of Children’s National Health System, Shayna Coburn, PhD, of The Johns Hopkins School of Medicine, Michael Karp, MD, of the University of Southern California, and Daniel Adelman, MD, of the University of California, San Francisco. Dietetic professionals and gluten-free industry representatives, Scott Mandell of Enjoy Life Foods, Elizabeth Roark, MPH, RD, of Pepsico/Frito-Lay, Janelle Smith, RD, of Celiac Disease Foundation, and Emily Luxford, RD, of Celiac Disease Foundation also shared their expertise. Biopharmaceutical and diagnostic companies were also represented by Anita Treohan, MD, of ImmusanT, Kristin Yarema, PhD, of Amgen, Stan Naides, MD, of Quest Diagnostics, and Annette Taylor, PhD, of LabCorp.
In keeping with our mission to advance research by leveraging technology, Celiac Disease Foundation was proud to launch iCureCeliac™, a patient-powered research network, at this year’s Conference. Attendees viewed the iCureCeliac™ video and learned how by entering their health data, they can help facilitate new treatments and a cure for celiac disease. Attendees also learned about Mosaic, a website for crowdsourcing research ideas where they can discuss what researchers should study to improve the lives of celiac disease patients. More than 1,000 people have participated in iCureCeliac™ with the number growing every day.
We were also pleased to launch our Patient Engagement Celiac Disease Network (PECDN) through the Solving Celiac Together Workshop at the Conference, training our first international cohort of 50 patients and caregivers. These patient advocates traveled from as far away as Ireland to attend. Through an award from the Patient Centered Outcomes Research Institute (PCORI), CDF continues to push researchers to investigate what is most important to patients when it comes to celiac disease potential treatments and cures. While patients and caregivers are eager to participate in research, many feel unprepared when working with researchers. Researcher expectations and usage of medical lingo can be intimidating. PECDN patient advocates were provided with the knowledge and tools to feel confident, prepared, and ready to engage as active partners in the research process. This training will be replicated throughout the country live and online throughout 2016 and 2017.
Finally, through the generous support of the Resnick Family and Cheerios, Celiac Disease Foundation was able to provide continuing education units for attending healthcare providers. There is a critical need for healthcare providers to be more aware and knowledgeable about celiac disease, including accurate diagnosis and treatment, as well as recognizing and addressing the psychological factors related to living with a chronic illness. It is important to encourage collaboration across medical and mental health providers so patients can receive comprehensive care to promote healthy body and mind. With over 100 healthcare providers in attendance at the Conference, Celiac Disease Foundation was proud to further its mission of increasing awareness and education about celiac disease.
The Gluten-Free EXPO
The Gluten-Free EXPO was open to the public for two days, featuring delicious gluten-free samples from over 100 exhibitors, both newcomers and pioneers in the gluten-free food industry alike. Attendees were able to sample to their hearts’ content, try new products not yet found in stores, and leave with a bag full of gluten-free goodies and coupons. With book readings, blogger and vlogger presentations, raffle drawings, and products available at discounted prices, the event was a grand success. “This is the largest gathering of its kind in the United States for patients, family members, and the public to receive credible and current information about celiac disease and gluten sensitivity,” stated Marc Riches, Board Chair for Celiac Disease Foundation. “This is a critical and life-changing event for all people coping with celiac disease or gluten sensitivity.”
Thank you to the following sponsors for their continuing support: General Mills, Snyder’s of Hanover, Dole Packaged Foods, Blue Diamond, Panasonic, Cream of Rice, Enjoy Life Foods, Frito-Lay, TH Foods, Simple Kneads, Udi’s, Pamela’s Products, Glutino, Hodgson Mill, Trans-Ocean, Bob’s Red Mill, NOW Foods, Explore Asian, Jones Dairy Farm, Mary’s Gone Crackers, Laughing Giraffe Organics, and So Delicious Dairy Free.
CDF also thanks our exhibitors, expert speakers, volunteers, and especially the attendees for making this the biggest and best National Conference & Gluten-Free EXPO to date.