Celiac Disease Foundation (CDF) was established in 1990 by Elaine Monarch to support the celiac disease community by funding important advocacy, education, and research initiatives. Today, under the guidance of a 12-person national Board of Directors and an internationally renowned Medical Advisory Board, the Foundation has grown to include a nationwide network of Chapters and Support Groups and full-time staff in Woodland Hills, California. From sponsoring the first serology workshop, which led to today’s celiac disease blood test, to supporting clinical research, advocating on Capitol Hill for gluten-free labeling laws, partnering with mainstream manufacturers in creating today’s gluten-free marketplace, and offering the number one website for celiac disease, CDF has played a crucial role in improving the lives of those with celiac disease and other gluten-related disorders and their loved ones. As we reflect on this past year, we want to thank you for your generous support, which has enabled us to achieve important advances in each of our key mission areas.
Celiac Disease Foundation’s commitment to both national and local advocacy continued to move forward. Despite the recent cutbacks at the federal level, CDF joined with other autoimmune-related disease groups to advocate for expanded investment in research and education on Capitol Hill, and in state capitols across the country. Congress responded by appropriating increased funding for NIH biomedical research, CDC chronic disease programs, and FDA initiatives. 2014 also saw the implementation of the FDA’s gluten-free labeling rule, and the TTB’s decision to align the labeling of alcohol products with the FDA rule. As the leading voice for people with celiac disease, CDF was instrumental in this effort, rallying its nationwide network of advocates to petition the FDA to make its gluten-free labeling rule a priority.
In order to encourage the public to bring celiac disease to the forefront of the nation’s healthcare agenda, CDF launched an online Advocacy Program. The Advocacy Program provides information, guidance, tools, and resources to push for improvements in celiac disease promotion, early detection, treatment, and research by raising awareness among government leaders, opinion makers, health policymakers, and the general public. Integrated with the American Celiac Disease Alliance (ACDA) platform, it includes a Legislative Action Center for individuals to easily learn about federal and state legislative bills, follow their status, and search for and contact their elected officials.
In 2015, CDF will continue to work with congressional leaders for the labeling of gluten in medication, and through its membership in the National Coalition of Autoimmune Patient Groups, to establish a Congressional Autoimmune Caucus and a National Autoimmune Patient Registry. At the local level, efforts will also continue to assure access to gluten-free lunches for all school-aged children, as well as gluten-free meals for college students. CDF will also serve as a liaison to the FDA’s Watchdog Program to assure that products labeled gluten-free meet the federal standards.
CDF remains dedicated to providing the public with innovative tools and technologies in the promotion of celiac disease education. This year, through our redesigned website, we unveiled a series of online tools to aid in the diagnosis and treatment of celiac disease and other gluten-related disorders. CDF’s Online Education Toolkit includes a Symptoms & Conditions Checklist designed to facilitate communication between patients and their healthcare practitioners; a nationwide Healthcare Practitioner Directory of those specializing in celiac disease and other gluten-related disorders, who can review checklist results to determine a patient care plan; and a 7 Day Gluten-Free Meal Plan to help the newly diagnosed and their families ease the transition to a gluten-free diet. Since inception, more than 300,000 people have used these tools, and this number continues to grow exponentially. CDF also introduced the Ask-the-Dietitian program, which includes resources, tools, and webinar and blog advice on how to live and thrive gluten-free.
National Education Conference & Gluten-Free Expo
This past June, Celiac Disease Foundation hosted its National Education Conference & Gluten-Free EXPO at the Pasadena
Convention Center with more than 3,000 people in attendance. This is the largest gathering of its kind in the United States for patients, family members, and the public to receive credible information about celiac disease and other gluten-related disorders, and to sample the latest and best in gluten-free products. Keynote speakers included world renowned experts, Dr. Alessio Fasano, author of Gluten Freedom, and the founder of Boston’s Center for Celiac Research, and Dr. John Zone, Chairman and Professor of Dermatology at the University of Utah, members of CDF’s Medical Advisory Board. In conjunction with the Conference, Dr. Fasano and Dr. Zone conducted Grand Rounds at Cedars-Sinai and UCLA Medical Centers, educating 300 medical staff and residents on the diagnosis and treatment of celiac disease.
Chapters & Support Groups
Through its Chapters and Support Groups, CDF provided education and support to more than 60,000 individuals with celiac disease and other gluten-related disorders, and trained more than 5,000 school health personnel in recognizing pediatric celiac disease. At the National office in Los Angeles, CA, CDF staff responded to more than 40,000 email, web, and telephone inquiries from people looking for information and support. CDF also provided direct education and support to tens of thousands of people through its monthly INBRIEF eNewsletter and quarterly INSIGHT print magazine.
CDF continued its vigorous outreach efforts to increase public understanding of celiac disease through national public awareness campaigns, speaking engagements, media appearances, and online and social marketing. Some of our accomplishments include:
- 4,000,000 visitors (and counting) educated at celiac.org – a 4-fold increase from 2013
- Continued #1 Google Ranking as the leading source for information about celiac disease
- Tripled email subscribers
- Doubled Facebook and Twitter followers
2015 will bring the debut of the CDF Gluten-Free Allergy-Free Marketplace which merges products and services into one source for the convenience of those with restricted diets. The Marketplace will be a one-stop-shop for gluten and allergen-free needs; it will allow consumers to add products to their shopping cart and either print out a shopping list or purchase the items on Amazon with one click. Consumers will also be able to learn about services offered by companies who directly support Celiac Disease Foundation’s mission of timely diagnosis and treatment. The Marketplace is set to debut in early 2015 as an innovative and valuable resource to the gluten-free community.
For CDF’s 25th Anniversary and in conjunction with May Celiac Awareness Month, the National Education Conference & Gluten-Free Expo will again be held in Pasadena, CA. This year’s National Conference will include a special Anniversary Banquet to recognize those who have played a key role in CDF’s growth these past two decades.
Celiac Disease Foundation continues to expand our efforts to improve the quality of life for all people affected by celiac disease and other gluten-related disorders. CDF is the trusted source for evidence-based medical information, with a commitment to providing summaries of scientific and clinical publications in easily comprehensible language. CDF actively supports vital initiatives to aid in the diagnosis and treatment of celiac disease. In 2014, CDF continued its support of research at Olive View-UCLA Medical Center surrounding the incidence of celiac disease in low-income populations, and partnered with Alvine Pharmaceuticals to promote patient recruitment for its CeliAction study, a clinical trial for an oral treatment for celiac disease.
CDF also partnered with Quest Diagnostics in its CeliacAnswers campaign to encourage patients to request and doctors to order celiac disease testing for symptomatic patients and first-degree relatives of those with celiac disease. For May Celiac Awareness Month, CDF joined forces with LabCorp to promote genetic testing and screening for celiac disease through an international campaign. Furthermore, CDF provided a comprehensive didactic seminar at the National Education Conference this past June when Medical Directors from Alvine Pharmaceuticals, Quest Diagnostics, and LabCorp joined together for a biopharma panel to provide a unique and inspiring presentation of information about advances in the screening and treatment of celiac disease.
Celiac Disease Foundation has also been actively involved in the legislative process surrounding screening for celiac disease. This year, the U.S Preventive Services Task Force (USPSTF) was charged with drafting a research plan for the screening of celiac disease. The CDF Medical Advisory Board, together with the National Board of Directors, submitted a letter to USPSTF supporting and upholding the comments made by the North American Society for the Study of Celiac Disease (NASSCD) regarding the Task Force’s draft research plan. Among other commentary, the NASSCD encouraged the USPSTF to focus on high risk individuals (those who are symptomatic, have associated diseases, or a family history) in their research.
Through a special gift from the Simon Family Foundation, CDF has been able to expand CDF Team Gluten-Free, our community-based fundraising program. CDF Team Gluten-Free members help fund CDF’s life-changing programs by racing, walking, hosting events, and supporting others in their community service endeavors. As funds raised doubled those of 2013, it is our pleasure to recognize our top Team members: Christopher Holland, Adrienne Bender, Alex Morris, Kaila Ryan, and Laini Golden.
We thank you for your continued support of and involvement with Celiac Disease Foundation, and with your help and commitment, we look forward to closing the diagnosis gap and assuring that all people with celiac disease and other gluten-related disorders receive the timely treatment that they deserve.
2013 Year in Review
CDF partnered with Quest Diagnostics and Olive View- UCLA Medical Center to launch a year-long study, “The Prevalence of Celiac Disease in a Primarily Hispanic Population.” The study evaluates the benefit of screening for celiac disease in symptomatic patients with the goal of raising awareness of the disease in the academic community and among physicians who treat patients in this population.
CDF invited the medical directors of the world’s leading biopharmaceutical companies focused on developing treatments for celiac disease to present at the 2013 CDF National Conference. Leaders from Alba Therapeutics, Alvine Pharmaceuticals, BioLineRx and ImmusanT presented their findings, encouraging the community of celiac disease patients to enroll in clinical trials to advance research.
CDF launched the nation’s most comprehensive online directory for patients to find reliable information on healthcare practitioners familiar with diagnosing and treating celiac disease and other gluten-related disorders.
CDF sponsored Grand Rounds at the Mayo Clinic Scottsdale with Medical Advisory Board Member Dr. Peter Green and at Olive View-UCLA Medical Center with Medical Advisory Board Member Dr. Joe Murray, educating 150 physicians to “Consider Celiac” in their patient evaluations.
CDF hosted the nation’s largest patient education conference, CDF 2013 National Conference and Gluten-Free EXPO, showcasing the latest in research, treatment and the gluten-free lifestyle to 3000 attendees.
CDF launched a robust, powerful and easily navigable new website at celiac.org, providing a trusted source for celiac disease and gluten-sensitivity research, diagnosis, treatment and support.
CDF’s INSIGHT, our quarterly newsmagazine, was made available in digital format for the first time reaching more than one million users of celiac.org.
CDF’s nationwide network continued to conduct its outreach into local communities to bring education and support programs to people affected by celiac disease, providing tools and resources needed to manage their health and maintain a good quality of life.
CDF is the leading voice for people with celiac disease, advocating for expanded investment in research and education on Capitol Hill. As a member of the American Autoimmune Related Diseases Association, Digestive Disease National Coalition and the National Coalition of Autoimmune Patient Groups, CDF lobbied congressional leaders for federal funding of celiac disease research and recognition of the month of May as National Celiac Awareness month.
As a member of the American Celiac Disease Alliance, CDF rallied its nationwide network of tens of thousands of celiac activists to petition the FDA to finalize its gluten-free labeling rule and to support the labeling of gluten in medication.
CDF aggressively conducted outreach efforts to increase public understanding of celiac disease through national public awareness campaigns, media appearances, and online and social marketing.