Each year, the world’s leading experts representing every aspect of celiac disease research, education, and advocacy gather at the International Celiac Disease Symposium (ICDS). As you know, there are no approved treatments for celiac disease beyond strict adherence to the gluten-free diet. And, as you know, it is estimated that approximately 30% of all celiac disease patients on the gluten-free diet still experience symptoms and/or continued intestinal villi damage. At the 2015 ICDS, a prominent biopharmaceutical researcher estimated that five proposed celiac disease treatments were somewhere in the drug development pipeline. At the 2017 ICDS, that same researcher estimated that as many as 25 drugs were in the pipeline, albeit most are at the very beginning of the pipeline, a process that can take billions of dollars and five years or more to navigate to receive Food & Drug Administration (FDA) approval to bring to market.
The primary reason for this recent explosion in interest in developing alternative treatments to the gluten-free diet is that there is now proof that hundreds of thousands, if not millions, of celiac disease patients continue to struggle with the disease while on the diet. The Celiac Disease Foundation (CDF) has been a leader in gathering this evidence and sharing it with researchers. In addition, CDF, taking a page from the successful work of patient advocacy organizations in the cancer space, launched the largest celiac disease patient registry in the world, known as iCureCeliac®. The presence of the registry directly supports drug development by dramatically lowering the cost of research and development through access to vetted, quality data from a wide variety of patients, many of whom are biopsy-diagnosed.
Looking back, 2017 has been an incredible year for celiac disease research, education, and advocacy. CDF has been at the center of many of the most exciting developments. While there are still no approved treatments for celiac disease on the market, we are making dramatic progress. Please read on to learn more about what the generosity of our donors has enabled.
CDF gives voice to the largest community of celiac disease and non-celiac gluten/wheat sensitive patients and caregivers in the world. Through research, education, and advocacy, CDF works to mitigate the injury, suffering, and expense caused by these conditions, including, and especially supporting, research for FDA-approved treatments and a cure.
Young Investigator Award
In 2015, CDF worked with the North American Society for the Study of Celiac Disease (NASSCD) to offer a three-year, $150,000 award to support young investigator research in celiac disease. This Young Investigator Award focuses on finding cause and treatment for celiac disease sufferers. This February, we announced the recipient of the first award. Dr. Matthew Shale of the Stanford University School of Medicine’s Institute for Immunity, Transplantation and Infection, seeks to understand more about the fundamental issue in the intestine: how the immune system knows when to react and when not to react. The Young Investigator Award is part of CDF’s effort to facilitate the transition of future celiac disease specialists from medical school, to fellowship, to clinician-scientist. It is our hope that these strategic investments in promising scientists and their work, made possible through our collaboration with NASSCD, advance our understanding of this complex disease, and lead to the next breakthrough in celiac disease research.
Clinical Trial Finder
In April, CDF launched the Clinical Trial Finder, a tool designed to help people with celiac disease and non-celiac gluten/wheat sensitivity participate in medical research clinical trials. In addition to actively advancing the search for treatments and a cure, patients who choose to participate in clinical trials may themselves get some relief from celiac disease and non-celiac gluten/wheat sensitivity symptoms. The CDF Clinical Trial Finder provides an easy-to-access, search, and explore, disease-specific interface to search for available trials by different variables, including region and disease symptom. This platform brings a greater awareness of clinical trials to the celiac disease community, helping to accelerate much-needed and long-overdue medical breakthroughs. Educating and empowering patients to play an active role in the research and treatment process has proven to be the most efficient path to the development of effective treatments and cures for disease.
NASPGHAN Clinical Guide for Pediatric Celiac Disease
The only approved treatment for celiac disease is lifetime adherence to a strict, gluten-free diet. Early and accurate diagnosis remains critical in the effective treatment of celiac disease. In an effort to increase the diagnosis rate of celiac disease in pediatric patients, in April, together with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN), CDF released the NASPGHAN Clinical Guide for Pediatric Celiac Disease. This easy-to-use web-based tool assists healthcare professionals in the diagnosis and management of pediatric celiac disease patients, providing recommendations for appropriate care.
2017 International Celiac Disease Symposium
Celiac disease research has gained tremendous momentum in recent years as groundbreaking research begins to be converted into treatments for celiac disease to improve patient quality of life. In September, CDF presented two studies at the International Celiac Disease Symposium (ICDS) in New Delhi, India. In our first study, CDF collaborated with researchers at Columbia University Celiac Disease Center on an iCureCeliac® study that sought to understand how depression modifies the association between gluten-free diet adherence and symptoms in celiac disease patients. In the second study, iCureCeliac® was used to determine that diagnosis of one or more autoimmune diseases in addition to celiac disease is common, particularly in women and older adults. CDF’s participation in ICDS is critical to furthering the mission of the Foundation, as well as advancing our understanding of celiac disease and non-celiac gluten/wheat sensitivity and its life-long impact on those affected.
iCureCeliac® Patient Registry
In 2016, CDF launched its single most impactful initiative ever, iCureCeliac®, an online portal for patients, or their caregivers, to provide critical insights into life with celiac disease and non-celiac gluten/wheat sensitivity. Anonymized questionnaire data, completed by iCureCeliac® participants under informed consent, are made available to researchers and governmental policy analysts to advance life-changing initiatives. Since its launch, 4,500 people have added their health data to iCureCeliac®. This valuable data will help create better diagnostic tools and treatments for cross-contact and gluten consumption, governmental policy changes, and access to new and innovative clinical trials nationwide which may, one day, cure celiac disease. Even at this early stage, iCureCeliac® is a singular success. Already, the registry has been deployed in support of several clinical trials for celiac disease therapeutic development.
Education and Support
Celiac Disease Training Program for Internal Medicine and Subspecialty Residents
With approximately 80% of individuals in the United States with celiac disease undiagnosed, millions of people are needlessly suffering. Experts have noted that among the most efficient ways to close the diagnosis gap is to improve the training of primary care physicians who see patients with a wide array of celiac disease symptoms, but still fail to order the blood screen panel for celiac disease. To this end, in February, 2017, CDF, joining with the University of Southern California (USC) Keck School of Medicine, and CDF Board member, Dr. Michael S. Karp, Chief of the Division of Geriatric, Hospital, Palliative and General Internal Medicine, with a grant from the Simon Family Foundation, conceived and launched a groundbreaking celiac disease training program for Internal Medicine and subspecialty residents. This model program trains young physicians in the recognition, screening, and treatment of celiac disease.
Gluten-Free Marketplace 2.0
CDF is dedicated to providing our community with innovative tools and technologies. In 2017, more than six million people used the resources at celiac.org. Originally launched in 2015, the CDF Gluten-Free Marketplace is a one-stop destination showcasing products and services from companies that care about the gluten-free community, and have made a deep commitment to supporting CDF’s mission of diagnosis, treatment, and a cure for celiac disease. In March, the Gluten-Free Marketplace 2.0 was released. New in the Marketplace 2.0 is the ability to find and “favorite” the best gluten-free recipes, filter and search recipes by category and course, access CDF’s dietitian-developed gluten-free meal plans, find important nutrition information for every product and recipe, get the latest in gluten-free lifestyle news, and much more. The Gluten-Free Marketplace 2.0 is available at celiac.org/marketplace and as an app for iPhone and Android.
Collaboration with the Gluten Intolerance Group
In April, CDF and the Gluten Intolerance Group (GIG) joined forces to improve the health and well-being of the celiac disease and gluten-free communities. In order to create the most comprehensive nonprofit source of research, education, advocacy, social networking, and support for the millions of people living with celiac disease and non-celiac gluten/wheat sensitivity, CDF transitioned the operation of its years-long support group program to GIG, and in exchange, GIG is helping to promote our iCureCeliac® patient registry. Thanks to this collaboration, CDF and GIG can together support our community while also advancing treatments and, eventually, a cure.
2017 National Conference & Gluten-Free EXPO
CDF hosted its 12th annual National Conference & Gluten-Free EXPO in June in Pasadena, CA. More than 3,500 people – patients, family members, caregivers, healthcare professionals, researchers, biopharmaceutical and diagnostic company representatives, and gluten-free foodies attended the event. The Conference featured the Patients as Partners Research Symposium where attendees were trained to become Patient Advocates. A special thanks to sponsor ImmusanT, and to Leslie Williams, Chief Executive Officer, and Dr. Robert Anderson, Chief Scientific Officer, for their participation as panelists. The EXPO celebrated food options now available for people with celiac disease, non-celiac gluten/wheat sensitivity, and others who seek benefits from the gluten-free diet. CDF thanks our exhibitors, expert speakers, volunteers, and especially the attendees for making this the biggest and best National Conference & Gluten-Free EXPO to date.
As the leading disease advocacy organization for celiac disease, we are making our voice heard in governmental legislation and processes every year. When the Affordable Care Act was repealed, CDF joined in a large, coordinated effort with other disease advocacy organizations to empower our community to urge their Congressional leaders to retain common sense patient protections for those with chronic diseases during the healthcare debate. Through our efforts, the tremendous support from our community, and the strength of disease advocacy organizations and individuals around the country, each proposed Affordable Care Act replacement bill was denied. We are proud to continue fighting for equal access to healthcare for patients with chronic conditions.
Patient Advocacy Program
In 2015, CDF received a two-year award from the Patient-Centered Outcomes Research Institute to develop a Patient Advocacy Program. Historically, medical research has not tapped the expertise of patients in the design and development of new treatments, often leading to disconnects between therapeutic outcomes and real patient needs. CDF’s Patient Advocacy Program seeks to address this disconnect by creating a national network of informed patients who understand the medical research process and who can engage with both the research and the patient communities to facilitate patient-centered outcomes in celiac disease research. In addition to a year-round online program, CDF held in-person Patient Advocacy Program workshops at our Patients as Partners Research Symposium in Pasadena, CA. and at the University of Chicago Celiac Disease Center’s Annual Celiac Education Day. CDF’s Patient Advocacy Program has now been accessed by more than 700 participants across the United States. The session at the University of Chicago concludes PCORI funding support. Thanks to the generosity of our donors, CDF will continue to offer the Patient Advocacy Program online, and at the annual CDF National Conference each spring in Los Angeles, CA.
2017 was a very successful year for CDF’s Team Gluten-Free (TGF) with participants raising more than $125,000! Team Gluten-Free is a community fundraising program that provides a simple way for athletes and non-athletes alike to raise awareness and funds for CDF’s programs for research, education, and advocacy. This year, TGF members from across the country hosted and participated in events, including golf tournaments, basketball tournaments, raffles, jewelry and bracelet sales, marathons, a Turkey Trot, and much more. CDF is proud of our TGF members for representing and empowering the gluten-free community, and we are deeply grateful for their hard work and dedication to drive diagnosis, treatment, and a cure for celiac disease.
Student Ambassador Program
The CDF Student Ambassador Program helps children, teens, and young adults become role models for others with celiac disease and non-celiac gluten/wheat sensitivity while raising awareness in the community and educating their peers. CDF Student Ambassadors are our boots on the ground in schools across the country. This year, more than 100 Student Ambassadors raised awareness and educated peers about celiac disease by making presentations and showing videos to classmates, writing articles for schools or local newspapers, distributing brochures to peers and doctors’ offices, creating bulletin boards, and much more. CDF is incredibly proud of our Student Ambassadors for their tremendous commitment and efforts.
Everything CDF does – every research grant, every diagnostic tool, every curriculum developed for healthcare providers, every public education program – is designed with one goal in mind: to end the needless suffering caused by celiac disease. In 2017, especially in the growth of the iCureCeliac® patient registry and its emergence as a key tool in the global effort to bring celiac disease treatments through the drug pipeline and to patients, we have seen substantial progress toward our goal. If you or a loved one has celiac disease, then you are well aware that we are not there yet. We must continue in 2018 and beyond to make smart investments in technology and people to help end the suffering. With your continued support, we will solve celiac disease together.
2016 Year in Review
For more than 26 years, Celiac Disease Foundation (CDF) has been leading the fight to drive diagnosis, treatment, and a cure for celiac disease and non-celiac wheat sensitivity, to improve the quality of life for all those affected, and to compel the public – from healthcare providers, to caretakers, government regulators, and biomedical researchers – to take this disease seriously. Central to that ongoing struggle was our need for answers:
- Why does it take so long to get a correct diagnosis?
- What are disease-related symptoms?
- What are the long-term implications of the disease?
- What are the associated health conditions?
- Why are there no treatments other than lifelong adherence to the gluten-free diet?
- What is the definition of “gluten-free?”
- When will there be a cure?
Over the years, many answers have emerged from research and advocacy efforts. Critical questions remain, especially around the continued low diagnosis rate, the lack of treatments for unintentional and intentional gluten consumption, and a cure. In the future, 2016 may very well be the year we look back on as the turning point in the fight to conquer celiac disease and put the suffering of millions behind us.
As you read this year’s report, we hope you come to appreciate, as we do, how we are entering a new era of biomedical research that will lead to treatments and a cure for our disease. Nothing is more important in our work.
In 2016, CDF launched its single most impactful initiative ever, iCureCeliac®. The diagnosis and the treatment of disease is at a tipping point, thanks to the marriage of genomics (genetic mapping to help understand diseases) and Big Data (using large sets of data to find disease patterns) analytics. As a result, there is a growing understanding that while a disease may be defined by one or more overarching characteristics, how it impacts the human body and mind, and how it is best treated and cured, can be quite specific to the disease carrier. The implications of this understanding are driving a fundamental and extremely promising revolution in researching celiac disease, its treatments, and potential cures. And, at the very center of this revolution is the growing database of celiac disease and non-celiac wheat sensitive patients that we call iCureCeliac®. iCureCeliac® is a patient-powered research network (patient registry) that allows patients and caregivers to contribute medical information and their experiences living with celiac disease and non-celiac wheat sensitivity to help researchers improve treatments and find a cure. CDF has partnered with Celimmune to deploy the iCureCeliac® patient registry as a screen for phase 2 clinical study for refractory celiac disease type II. This is the first-ever use of the iCureCeliac® patient registry to support celiac disease therapeutic treatment development.
In February, the Effective Health Care (EHC) Program at the Agency for Healthcare Research and Quality (AHRQ) released it’s first-ever evidence review on Diagnosis of Celiac Disease. CDF is proud to have provided input for this much-needed and critical study, with CDF CEO, Marilyn Geller, serving as a Key Informant. There are many reasons why the release of this long-awaited review is important, but one of the most notable is the fact that for the first time, the U.S. government has decided that celiac disease is worthy of a comprehensive evidence review.
Last year, CDF partnered with the North American Society for the Study of Celiac Disease (NASSCD) to award a three-year, $150,000 grant to support young investigator research in finding the cause and treatment for celiac disease. In June of this year, the NASSCD began accepting applications for the Young Investigator Award for Celiac Disease Research, the winners of which will be announced in December. The primary goal of the Award is to attract exceptionally promising early career academic investigators to the field of celiac disease.
2016 advocacy efforts focused on empowering patients to drive diagnosis and research. In January, CDF was awarded a grant from the Patient-Centered Outcomes Research Institute (PCORI) to develop our Patient Advocacy Program, allowing us to train patients and caregivers to become more involved in research in ways that will impact the treatment of their disease. With live workshops in Los Angeles and Boston, webinars, and online access, we are creating a national network of advocates trained in patient-centered outcomes research (PCOR). The Patient Advocacy Program is part of a comprehensive effort by CDF to meet the public health challenge of increasing the diagnosis rate of and improving treatments for celiac disease and non-celiac wheat sensitivity, while working toward a cure. Learn more about the Patient Advocacy Program here.
Thanks to a gift from the Weitz Family, CDF developed a Back-to-School and 504 Plan Guide and webinar to help parents and children navigate the gluten-free diet in school. A 504 Plan is the federally-recognized method of detailing accommodations that need to be made by public schools to assure that a child’s gluten-free diet and disability needs are met. In this Guide, we offer suggestions for age-appropriate ways of managing celiac disease and non-celiac wheat sensitivity at school and college to ensure good health, proper development, and academic success. To review the Back-to-School and 504 Plan Guide, click here.
In August, CDF launched the Student Ambassador Program to enable our youth to take an active role in celiac disease advocacy and education efforts in their own communities. The Student Ambassador Program provides tools and resources for elementary, middle, high school, and college students to demonstrate the impact of celiac disease on individuals and their families. Learn more about the Student Ambassador Program here.
EDUCATION AND SUPPORT
CDF is dedicated to providing healthcare professionals and patients with innovative tools and technologies. In 2016, more than 6.5 million people used the resources at celiac.org. With the introduction of the “For Professionals” section at celiac.org, healthcare providers now have access to a comprehensive set of tools for the diagnosis and management of celiac disease. Furthermore, in support of our mission, we introduced three provider education programs to drive diagnosis and treatment of celiac disease.
In the first national effort to systematically address the emotional and psychological issues of people with celiac disease and non-celiac wheat sensitivity, CDF and Children’s National Health System (Children’s National), with a gift from the Resnick Family, launched a partnership to expand provider education around the emotional and psychological impact associated with celiac disease and to empower healthcare providers to identify and treat the medical and mental health aspects of the disease. A live workshop was held at Children’s National in Washington, D.C. in February and at the CDF National Conference in Pasadena, CA. The program is available online for patients and for providers.
In partnership with the Simon Family Foundation and the USC Keck School of Medicine, CDF funded the development of an internal medicine residency training program in celiac disease. The goal of this program is to create a national model to train young physicians in the recognition, screening, and treatment of celiac disease and non-celiac wheat sensitivity. USC residents are currently researching the barriers to screening and diagnosis in the primary care setting, results of which will inform the proposed curriculum.
To directly educate providers already in practice, CDF hosted and provided continuing medical education units to more than 100 physicians, dietitians, and mental health professionals at our 2016 National Conference. More than 3,200 people – patients, family members, caregivers, healthcare professionals, researchers, biopharmaceutical and diagnostic company representatives, and gluten-free foodies – attended the National Conference & Gluten-Free EXPO in Pasadena, CA. As a resource for both patients and providers, we developed a “What You Need to Know” video series, where Conference speakers discuss the information you need to thrive gluten-free and maintain good health with celiac disease and non-celiac wheat sensitivity. The video series can be found here.
Adding to our patient resources, and based upon recommendations from the world’s leading medical experts, we debuted the Adult and Pediatric Celiac Disease Follow-Up Checklists, which specify best practices in post-diagnosis celiac disease management for physicians and dietitians to deliver optimal patient care. Complementing this, CDF Chief Executive Officer, Marilyn Geller, served as the North American patient advocate for The Transition from childhood to adulthood in coeliac disease: the Prague consensus report. This is an important academic paper that offers recommendations to healthcare professionals to help manage celiac disease in adolescents and young adults and provide transition into adult healthcare for patients with the disease.
We also launched our new Lifestyle Hub, providing delicious gluten-free recipes that you can filter by course and cuisine type, as well as customizable meal plans to suit your dietary preferences and needs. Included in the new Lifestyle Hub is an interactive, nutritionally balanced Pediatric 7-Day Gluten-Free Meal Plan with tasty, kid-friendly recipes to help parents of newly diagnosed children, as well as those who continue to struggle to provide nutritious gluten-free meals for their children. With eight million users to date, our expanded Gluten-Free Marketplace is also featured in the Lifestyle Hub, which includes hundreds of gluten-free food items that can be filtered by allergens and preferences and purchased through Amazon with a single click.
In 2017 and beyond, we will focus on further PCORI efforts, including patient recruitment for iCureCeliac™, so that clinical research can happen faster, more efficiently, and less expensively than is possible now. CDF is grateful to the Gilbert Family for making possible the expansion of our iCureCeliac™ database. We will continue to work with the NIH, FDA, and Congress to elevate celiac disease on the nation’s healthcare agenda. Through celiac.org, we will add to our innovative digital tools for screening, diagnosis, and treatment. In the coming months, we will be adding clinical guidelines software for pediatric celiac disease diagnosis, in partnership with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN), to our “For Professionals” section of the website. We will be presenting our Celiac Disease Patient Advocacy Program live at the CDF National Conference and at the University of Chicago Celiac Disease Center, and we plan to present our initial findings from iCureCeliac™ at Digestive Disease Week in Chicago and the 2017 International Celiac Disease Symposium in India. Finally, we will be working with biopharmaceutical companies to recruit for clinical trials to advance treatments and a cure for celiac disease. We look forward to sharing the updates with you in the coming months as we work to solve celiac disease together.
2015 Year in Review
For far too long, celiac disease has been relegated to the margins of America’s $3 trillion healthcare industry. As a consequence, millions of Americans who have this serious autoimmune disease are suffering needlessly today. Quite likely, there are undiagnosed celiac disease sufferers right here in your neighborhood, living in agony from the cramping, constipation, bloating, diarrhea, anxiety, fatigue, depression, brain fog, joint pain, and countless other symptoms associated with celiac disease and gluten sensitivity.
How do we know this? The math is actually quite simple. Researchers estimate that three million Americans have celiac disease, or slightly less than 1% of the population. That is approximately the number of Americans with Parkinson’s disease, multiple sclerosis, muscular dystrophy, lymphoma, leukemia, and myeloma combined. Yet, despite the surge in interest around the gluten-free diet, only one in six of those with the disease has been correctly diagnosed.
In 2015, Celiac Disease Foundation (CDF) focused our efforts on changing this persistent ignorance about celiac disease that continues to threaten the well-being – both short- and long-term – of millions of Americans. As we did in 2004 by achieving federal recognition of celiac disease through the National Institutes of Health (NIH) Consensus Development Conference, we took our arguments, our data, and our passion about ending the needless suffering caused by celiac disease to the heart of the American massive medical enterprise, Washington, D.C., the home of the NIH, the Food and Drug Administration (FDA), and the U.S. Department of Health and Human Services (HHS).
Additionally, in 2015, we focused our efforts on supporting the small, but exceptionally talented, celiac disease research community that is seeking to answer the difficult questions that continue to surround this disease. Specifically, what are the long-term implications of celiac disease? Why are there no approved drug therapies to mitigate disease impact? And, more importantly, why is there no cure?
In February 2015, CDF funded and sat on the Steering Committee that organized the first-ever FDA meeting on celiac disease. The FDA Gastroenterology Regulatory Endpoints and Advancement of Therapeutics (GREAT3) Workshop served to formalize the discussion of therapeutic treatments for celiac disease. This landmark conference addressed endpoints and outcome measurements for clinical trials for products intended to treat celiac disease. In April 2015, in preparation for the FDA’s Gastrointestinal Disorders Patient-Focused Drug Development Workshop, the second-ever FDA meeting addressing celiac disease, CDF surveyed our community. Over 1,000 individuals responded in just two days. The results of the survey were illuminating, and deeply disturbing. They were not, however, a surprise to anyone with celiac disease or who cares for someone with the disease.
- 45% reported it took five years or more after symptoms presented to receive their diagnosis of celiac disease. Only 21% were diagnosed in the first year. Note that this reflects the population fortunate enough to receive a correct diagnosis.
- 21 different symptoms were reported by our respondents as having a significant impact on their life. 50% cited abdominal pain, and slightly less than that cited fatigue. Chronic diarrhea and bloating ranked high, as did brain fog for more than 27%, and depression or anxiety for more than 25%.
- Even though 85% report that their symptoms have improved since adopting a gluten-free diet, 54% report that there are specific activities that are important to them that they cannot do because of the disease.
- More than 60% report that the high cost of gluten-free foods is a financial burden.
- Almost 70% report that symptoms last three days or longer after exposure to gluten. More than 8% report that symptoms last 14 days or more.
- 40% report missing school/work days due to symptoms.
It is evident that adherence to a strict gluten-free diet helps our community survive, but that therapies are needed to test and treat accidental exposure and to treat celiac disease that is not mitigated by the gluten-free diet. In addition to the FDA Workshops focusing on the drug development pipeline, we were invited to meet with Dr. Susan Mayne, Director of the Center for Food Safety and Applied Nutrition, to address the gluten-free food labeling needs of the celiac disease community. We have committed to providing Dr. Mayne’s office with patient-reported data regarding the efficacy and impact of the FDA gluten-free labeling rule and its communication through our national celiac disease patient registry tool.
CDF met with the White House on their Precision Medicine Initiative, and later with NIH on the same program. We are driving the effort with Congressman Tim Ryan’s (D-OH) Washington, D.C. staff to strategize support of H.R. 3648: Gluten in Medicine Disclosure Act, which aims to require that medication labels identify any gluten-containing ingredient.
CDF remains dedicated to providing the public with innovative tools and technologies in the promotion of celiac disease education. This year, CDF was proud to add another resource to our array of online tools for patients and consumers on celiac.org. Complementing the Symptoms Checklist, Healthcare Practitioner Directory, and 7-Day Gluten-Free Meal Plan, CDF launched the Gluten-Free Allergy-Free Marketplace, an online destination hosted on celiac.org, also available as an app for iPhone and Android. Featured at celiac.org/marketplace, the Marketplace showcases products and services from companies that care about the gluten-free and allergy-free community, and have made a deep commitment to supporting CDF’s mission of diagnosis, treatment, and a cure for celiac disease.
National Conference & Gluten-Free EXPO
This past May, 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. Attendees of the National Conference were rewarded with presentations from members of CDF’s Medical Advisory Board, including: Joseph Murray, MD, Sheila Crowe, MD, and Shelley Case, BSc, RD. The National Conference included an educational nutrition and dietetic panel, moderated by Shelley Case, BSc, RD, featuring Anne Lee, EdD, RD, LD, Director of Nutritional Services, Dr. Schar USA, Inc., and Yang Pan, MD, PhD, Principal Scientist, PepsiCo. This year’s event also included a 25th Anniversary GALA Dinner, honoring CDF’s Founder, Elaine Monarch.
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 through the CDF SoCal Chapter School Nurse Awareness Program (SNAP). CDF also provided direct education and support to tens of thousands of people through our monthly INBRIEF eNewsletter and quarterly INSIGHT print magazine.
CDF continued our 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:
- 6,000,000 unique visitors (and counting) educated annually at celiac.org – a 20% increase from 2014
- Continued #1 Google ranking as the leading source for information about celiac disease
- Doubled email subscribers from 2014
- 50,000+ Facebook likes and 20,000 Twitter followers
Thanks to research, we have learned more about celiac disease in the last three years than we learned in the previous 50. For example, we now know that the prevalence of celiac disease is doubling approximately every 15-20 years in the population. This is a stunning rate of growth. Unfortunately, we don’t know why. We have also learned that celiac disease has significant comorbidities with a number of other diseases. And while there is evidence, for example, that undiagnosed celiac disease in young children has a direct link to type 1 diabetes, we don’t understand why. These are the reasons we continue to invest in research:
- In the first national effort to systematically address the emotional and psychological issues of young people with celiac disease and other gluten-related disorders, CDF and Children’s National Health System (Children’s National) have launched a partnership to expand mental health education around this specific issue, and to empower healthcare providers to effectively diagnose and treat celiac disease. Children’s National is based in Washington, D.C., and is recognized as one of the nation’s top pediatric teaching hospitals by U.S. News & World Report. The partnership is funded by a generous endowment from the Resnick Family, longtime CDF supporters.
- The relative paucity of research funding from both federal and private sources for celiac disease is leading to another issue: a dearth of young researchers entering the field. To help maintain a critical pipeline of young talent into celiac disease research, through the North American Society for the Study of Celiac Disease (NASSCD), CDF is funding a three-year professional development grant to fellows in the U.S. pursuing a career in celiac disease research.
- Structured and monitored tracking of celiac disease patients and their families, as well as of individuals who have genetic markers for celiac disease but no disease presence, will both speed the development of therapeutic treatments for disease and help chart comorbidities and long-term disease impact. CDF has partnered with a dozen other disease advocacy organizations and the Patient Centered Outcomes Research Institute (PCORI) to build the Unified Celiac Disease Registry to improve medical research.
In 2016 and beyond, we will focus on further PCORI efforts, including patient recruitment for the Unified Celiac Disease Registry, so that clinical research can happen faster, more efficiently, and less expensively than is possible now. We will continue to work with the NIH, FDA and Congress to elevate celiac disease on the nation’s healthcare agenda. Through celiac.org, we will add to our innovative digital tools for screening, diagnosis, and treatment. In addition to offering comprehensive resources, we also look forward to hosting our 2016 National Conference & Gluten-Free EXPO in partnership with Children’s National Health System and UCLA and USC Medical Centers, our Ask-the-Dietitian and Team Gluten-Free programs, and more.
2015 was an amazing year for CDF Team Gluten-Free! TGF members from across the country hosted and participated in over 100 events. Celiac Disease Foundation knows how hard our CDF Team Gluten-Free members work to raise funds and increase awareness of celiac disease, and we are so grateful to have them as part of the CDF family. Looking back at this year, we want to acknowledge some of our TGF members who have really inspired us this year.
Micah Martin’s six year old daughter’s diagnosis of celiac disease inspired him to take action. This year, Micah set out to complete the “Double Trifecta” with Spartan Race for Team Gluten-Free. Micah competed in six races across California while raising awareness for celiac disease, including the “Charity Challenge” Spartan Race this October which allows athletes to “Race for a Reason” and represent their charity. Micah led a team of six elite athletes to compete on behalf of Team Gluten-Free!
“Keeping her healthy is a daily struggle, but with the help of CDF, we are finding more ways to keep her healthy and living gluten-free.” – Micah
Julien Solomita co-hosted two Team Gluten-Free Meetups this year. A YouTube Vlogger with over 600,000 subscribers, Julien was determined to use his popularity to help increase awareness of celiac disease – a disease close to his heart after being diagnosed at age 15. Over 350 people have joined us for our Celiac Disease Awareness Meetups with Julien to meet their favorite YouTube personality, enjoy gluten-free food, and learn more about celiac disease. It is through events like these that Team Gluten-Free is helping fulfill the mission and purpose of CDF.
“CDF was my very first connection to gluten-free living. They taught us how to survive the gluten-unfriendly world of eight years ago.” – Julien’s Mother, Lisa
Adrienne Bender hosted many Team Gluten-Free events this year, including a benefit dinner at Eno Terra Restaurant in March, and a TGF workout class at The Max New Jersey in October. Adrienne partnered for the second year in a row with Chloe + Isabel, an online jewelry boutique. Twenty percent of the proceeds using a special benefit link went back to CDF Team Gluten-Free this fall. Adrienne will be hosting her final TGF event of the year this December when she partners with the New Jersey Devils to hold a Celiac Disease Awareness Hockey Night!
“Fundraising helps our son feel like a part of a community, rather than being ostracized because he can’t eat the same things his friends do.” – Adrienne
Be a part of the team dedicated to creating a world without celiac disease! Team Gluten-Free is CDF’s community fundraising program that provides a simple way for athletes and non-athletes alike to get involved and raise awareness and funds for Celiac Disease Foundation’s programs for advocacy, education, and advancing research. Fundraising efforts may include any event – from marathons to bake sales, movie nights to wedding favors – any way that you can have fun while raising funds. The possibilities are endless.
We are grateful to have such amazing CDF Team Gluten-Free members. Next year is YOUR chance to join! Visit the TGF page to learn about other events and to find out how you can get involved.