Join Beyond Celiac and fellow gluten-free community members at the Beyond Celiac Community Summit this September 30 in Greenwich, Connecticut. For our inaugural Summit, the theme is game shows, so get ready to spin that wheel and play to win. We'll have all your favorites covered, from Wheel of Gluten-Free Fortune to Celiac Family Feud! This is your chance to come on down and join the gluten-free fun!

This full-day event includes gluten-free meals, games, and expert speakers. The schedule is packed with panelists from various fields, including registered dietitians, gastroenterologists, and more. Our speakers will give you the inside scoop on celiac disease, so you'll be a Jeopardy-level champion when it comes to talking about this serious autoimmune disease. And don't worry, we won't be asking any tricky questions like Who Wants to Be a Millionaire, we just want to make sure you have all the knowledge and resources you need to live your best gluten-free life.

Summit Agenda

8:00    Registration, vendor expo, gluten-free breakfast

9:00    Welcome from special celebrity emcee, Jenna Wolfe

9:05    Introductory remarks by Beyond Celiac CEO Alice Bast 

9:10     Icebreaker game

9:30    Ask Me Anything panel with Alan Ehrlich, MD, Ritu Verma, MD, Eugenia Uche-Anya, MD, MPH, and Sarah Yourman, RDN, CDCES

10:30  Break, vendor area, move to breakouts

10:45  Breakout Sessions:

• Celiac 101
• Gluten-free Cooking with Matt Weinstein of Glass of Weinstein
• Science of a Cure
• Gluten-free Travel with Jen of The Nomadic Fitzpatricks

11:45  Break, vendor expo

12:00 Buffet-style gluten-free lunch with speaker and cookbook author Terry Walters

1:00    Living Your Best Gluten-Free Life Panel with Erin Smith, Liz Purvis, Emily Shaw, and Phil of Phil Hates Gluten 

2:00    Celiac Family Feud

2:30    Patient Empowerment with Cherise Shockley

3:00    Break, vendor expo

3:15    Breakout Sessions featuring Beyond Celiac Ambassadors

4:15    Closing keynote by the TODAY Show's Dylan Dryer

4:30    Wine, soft drink, and gluten-free hors d’oeuvres reception

5:15    Goodbyes and official end of event

Check out the full list of speakers, learn more, and get tickets at beyondceliac.org/summit23

Exciting developments are underway in the celiac disease space as the Beyond Celiac Coalition proudly announces the addition of three esteemed members to its ranks. This multi-stakeholder pre-competitive alliance, established in 2022, has garnered widespread support from leading organizations and individuals dedicated to advancing the understanding and treatment of celiac disease. With the recent inclusion of the American Gastroenterological Association (AGA), Dr. Jocelyn Silvester of Boston Children's Hospital, and Dr. Marie Robert of Yale School of Medicine, the Coalition's collaborative efforts gain further momentum towards achieving its ultimate goal.

Unifying Experts for Progress

The Beyond Celiac Coalition has brought together renowned celiac disease experts, healthcare providers, industry leaders, and research institutions in an unprecedented collaboration. Our collective mission is to identify and address critical barriers in celiac disease diagnosis and treatment development. Central to this endeavor is the group's focus on overcoming patient barriers to inclusion, engagement, participation, and retention in clinical trials, while also establishing the Coalition as a platform for sustained engagement with the FDA.

The AGA's Vital Role

The inclusion of the American Gastroenterological Association (AGA) within the Beyond Celiac Coalition strengthens the alliance with an influential and trusted voice in the field of gastroenterology. With over 16,000 members worldwide, the AGA is recognized for its unwavering commitment to advancing the understanding and treatment of gastrointestinal disorders. By joining forces with the Coalition, the AGA will play a pivotal role in shaping strategic directions and initiatives focused on patient-centric innovation in celiac disease.

Distinguished New Members

The Coalition's growth is further amplified by the addition of two distinguished individuals: Dr. Jocelyn Silvester of Boston Children's Hospital and Dr. Marie Robert of Yale School of Medicine and Yale New Haven Hospital. Dr. Silvester's expertise in pediatric gastroenterology and her significant contributions to celiac disease research make her a highly respected figure in the field. Dr. Robert, renowned for her expertise in GI pathology, brings invaluable insights and experience to the Coalition's collective knowledge. Their inclusion reinforces the importance of collaborative efforts in driving meaningful change.

Gratitude is extended to all members who have generously dedicated their time and effort to support the launch of the Beyond Celiac Coalition and shape its strategic priorities. The following individuals and organizations have played an integral role:

• Dr. Robert P. Anderson
• Anokion
• imaware
• Dr. Edwin Liu
• Dr. Joseph A. Murray
• Provention-Bio
• Dr. Marisa Stahl
• Dr. Adam C. Stein
• Takeda Pharmaceuticals

The Beyond Celiac Coalition and its new members mark significant milestones in the quest for advancements in celiac disease research and treatment. With an ever-growing network of experts and organizations dedicated to overcoming barriers and fostering patient-centric innovation, the Coalition is positioned to make a substantial impact. Through collaboration and continued engagement, the future looks promising for those affected by celiac disease, as the Coalition paves the way for meaningful change and improved outcomes.

Learn more about the Beyond Celiac Coalition.

Download the 2023 Beyond Celiac Coalition Brochure.

By Alice Bast, Beyond Celiac CEO

I am excited to share the news that the Beyond Celiac communications team has been recognized for their outstanding efforts in spreading knowledge about celiac disease! The team’s strategic approach and unwavering dedication to elevating the patient voice have earned them the well-deserved Nonprofit/Government Communications Team of the Year award in the prestigious Ragan & PR Daily’s Communicator of the Year Awards. In the realm of healthcare communication, few accomplishments are as commendable as effectively raising awareness about a widely misunderstood disease. The Ragan award recognizes that Beyond Celiac is doing this job at an unmatched level.

At Beyond Celiac, it is our mission to illuminate the often-misunderstood world of celiac disease, shedding light on the seriousness of this autoimmune condition and the various symptoms it encompasses. My comms team works day in and day out to bridge the knowledge gap between the general public and patients who need the gluten-free diet as a medical necessity.

To achieve this, the Beyond Celiac communications team harnesses the power of data and storytelling. Quantitative and qualitative research serve as the foundation for the compelling stories, reports, shareable social media posts, infographics, and informative emails that earned Beyond Celiac this award. My team leverages multiple channels to reach diverse audiences, maximizing our impact and ensuring that our messages resonate far and wide. We do this in a way that is inviting and innovative, colorful and compelling as evidenced by the way people engage with our messages on Instagram, Facebook, Twitter, Tik Tok, YouTube, LinkedIn and through emails and on our website.

Voices of Celiac Campaign

Voices of Celiac is one of our outstanding initiatives. By showcasing the diagnosis stories of individuals affected by celiac disease, the team fosters empathy and understanding in those who may not understand how difficult it is to get diagnosed with celiac disease and manage the gluten-free diet. The stories told by people with celiac also resonate with folks who are going through similar challenging experiences.

Through a dedicated page on our website, press releases, media coverage and social media platforms, these narratives have found their way into the hearts and minds of countless individuals, creating a powerful ripple effect of awareness and compassion. We are truly putting a face to and giving a voice to those with celiac disease. And that face and those voices are being recognized and heard outside the celiac disease community. 

Polling the Public on their Perceptions

Our groundbreaking "2022 Landscape of Celiac Disease Report – Beyond Celiac," produced in collaboration with The Harris Poll, provided invaluable insights into the way the general public perceives celiac disease and gluten sensitivity.

With this report, the team armed themselves with concrete data to fuel their communication efforts. They expertly disseminated the findings through press releases, dedicated landing pages, mass emails, and a targeted social media campaign. Notably, articles were posted on the other organization’s websites, spotlighting specific takeaways, including the disparities among Black Americans in awareness and treatment of celiac disease.

Words Have Power

The impressive results of the Beyond Celiac communications team's endeavors speak for themselves. Sharing close to 200 unique patient stories that underscore the gravity of celiac disease gives a voice to those who have long suffered in silence, and The Landscape of Celiac Report landing page has received nearly 3,000 page views, while the report itself reached an impressive 997 Associated Press outlets. Additionally, HealthDay, a renowned syndicator of health news, featured an enlightening story that reached esteemed publications like US News & World Report, amplifying the crucial message of Beyond Celiac.

It is through the tireless work of passionate individuals like those on the Beyond Celiac communications team that breakthroughs in disease awareness are made possible. And with this greater understanding, we are able to work together with our community to accelerate research for treatments and a cure and have real hope that we will not be forever shackled by the confines and fallibility of the gluten-free diet. By shining a spotlight on the ways celiac disease can affect everyday life, Beyond Celiac has brought about tangible change, dispelling misconceptions and fostering a greater understanding of this autoimmune disorder. The team’s commitment to transforming lives through communication has truly set them apart, and their recognition as the Nonprofit/Government Communications Team of the Year is a testament to their outstanding achievements.

As we celebrate the team’s recognition as the best of the best in communicating about and with the celiac disease community, we also take this moment to reflect on the power of effective communication and the profound impact it can have on individuals and communities. Let us champion the values of understanding, compassion, and knowledge in our own efforts to make the healthcare field—and ultimately the world—a better place.

Beyond Celiac is making strides toward health equity for all individuals affected by celiac disease. Through a series of initiatives and partnerships aimed at reducing disparities and increasing access to resources, Beyond Celiac is at the forefront of increasing diversity in the celiac disease space.

Studies, including some helmed by Beyond Celiac, are beginning to uncover notable disparities in celiac disease diagnosis and treatment. More work is needed in this area, which is why Beyond Celiac has stepped up to lead the way.

Partnerships and Research

From 2020 to 2024, Beyond Celiac worked with the National Minority Quality Forum (NMQF), a leading advocacy organization on issues of health disparity, to address health inequities in the diagnosis and treatment of celiac disease. Beyond Celiac and NMQF investigated the extent of undiagnosed celiac disease, particularly among non-Caucasians, through analysis of Medicare and Medicaid data. The goal was to map celiac disease across the United States to drive diagnosis and ensure clinical trials include a diverse, representative patient population.

Beyond Celiac published research from this mapping project at the 2023 Digestive Disease Week (DDW) conference. The poster, "Correlations between relative prevalence of celiac disease and sociodemographic variables in the United States,” was presented by Haley M. Zylberberg, MD, a gastroenterology fellow at Columbia University who analyzed the NMQF data. A poster presented at DDW 2022 also highlighted racial and ethnic disparities in celiac disease diagnosis from the data.

In addition, Beyond Celiac has teamed up for a multi-year partnership with Takeda Pharmaceutical Company to identify and reduce disparities in celiac disease diagnosis and management, aiming to raise awareness and help minority patients participate in clinical trials.

“Beyond Celiac is a vital conduit within the celiac disease community, so we are eager to expand our work together to better support people with celiac disease,” said Marcelo Freire M.D., Head of Gastroenterology, Global Medical Affairs at Takeda. “Improving diagnosis and increasing awareness of celiac disease, particularly among underrepresented communities, is an important endeavor with the potential to significantly improve patient inclusion and access to research and care.”  Added Sylvester Uwumarogie, MD, Associate Director and DE&I project lead, Global Medical Affairs.

Community Guidance

Beyond Celiac has also assembled a Diversity, Equity, and Inclusion (DEI) webpage, committee, and advisory board, which is dedicated to ensuring that the organization's policies and practices reflect its commitment to equity and inclusivity. This advisory board is composed of dedicated individuals working to promote cultural competency, diversity efforts, and sensitivity within and outside of the organization. DEI advisory board members include:

• Elizabeth Valencia, MD, JD, FCLM - Enterprise Associate Dean of Diversity Equity and Inclusion for Mayo Clinic Alix School of Medicine for Arizona, Florida, Minnesota campuses; medical expert in Breast Cancer Imaging & Intervention at Mayo Clinic Rochester, MN
• Liz Purvis - Advocate. Black and mixed-race content creator living with celiac disease. Shares educational materials, reviews, and recipes on the Instagram account @yeet.that.wheat 
• Monique Germone, PhD, BCBA - Pediatric psychologist of the Colorado Center for Celiac Disease at Children’s Hospital Colorado and associate professor at the University of Colorado, School of Medicine
• Amanda Cartee, MD - Gastroenterologist, University of Alabama at Birmingham Hospital; assistant professor in the Division of Gastroenterology and Hepatology at the University of Alabama at Birmingham
• Juanita Belton, PA-C, MPH - Physician assistant in gastroenterology at Boston Medical Center with a subspecialty in Inflammatory bowel disease and instructor at Boston University Medical Center’s Dempsey Center for Digestive Disease

Elevating the Patient Voice

Finally, Beyond Celiac is collecting and sharing diverse patient stories to raise awareness about the unique challenges faced by individuals with celiac disease from all backgrounds, races, genders, and ages through our award-winning Voices of Celiac campaign. By gathering and highlighting these experiences, the organization hopes to inspire greater understanding and empathy for those living with this condition and to foster a more inclusive and supportive community. As community member Jessica shared, celiac disease was initially dismissed as a possibility due to her ethnicity. Stories like these are important to share and expand what medical professionals believe to be the “face” of celiac disease.

"Our vision for a world Beyond Celiac is one in which all people have equal access to good health choices, healthcare, and health outcomes," says Alice Bast, CEO of Beyond Celiac. "We are committed to reducing disparities in the diagnosis and treatment of celiac disease, and to working with diverse communities to ensure that everyone can live their healthiest life. By partnering with organizations like the NMQF and Takeda, creating a DEI Committee and Board, and collecting diverse patient stories, we are taking important steps toward achieving this goal. We are honored to be the leading organization in promoting health equity in celiac disease.”

To learn more about Beyond Celiac health equity efforts, visit: beyondceliac.org/celiac-disease-and-health-equity 

May 2023 marks Celiac Awareness Month and the 20th anniversary of Beyond Celiac! Yes, you read that right—two whole decades of tireless service to the celiac disease and gluten-free community. This milestone is not just a mere number, but a testament to our organization’s unwavering commitment towards empowering and advocating for those affected by celiac disease. As we raise a gluten-free toast to this remarkable achievement, which we couldn’t have done without the support of our amazing community, let's take a moment to reflect on our journey and revel in the magnificent milestones we have achieved so far. From pioneering patient advocacy to driving cutting-edge research, we have been at the forefront of the celiac disease movement.  As we look back on the past twenty years, we can't help but feel proud of our accomplishments as the premier patient-advocacy organization for celiac disease. Without further ado, let's take a glance at our highlight reel - a glimpse of some of the many awe-inspiring achievements that have shaped our journey!

20 Years of Service - 20 of our Notable Achievements

1. Driven by her desire to help others get diagnosed early, Alice Bast defies experts and lands a grant from the National Institutes of Health and Beyond Celiac is born!
2. Ed Snider, founder of the Philadelphia Flyers, becomes the first Beyond Celiac Board Member.
3. Beyond Celiac launches the first ever National Awareness Campaign with Heidi Collins of CNN as our spokeswoman and in partnership with Quest Diagnostics, which resulted in increasing testing for celiac disease by 40%.
4. Beyond Celiac launches the first celiac disease Continuing Medical Education Program, training 900 medical professionals and resulting in an estimated 6,000 new diagnoses.
5. Beyond Celiac leads the way in making gluten-free food available and more affordable with the launch of the first ever gluten-free expo, Appetite for Awareness. Events held in 6 cities across the country in partnerships with Walmart, Whole Foods, Wegmans and more lead to the explosion of gluten-free packaged goods available everywhere.
6. Beyond Celiac partners with Anheuser-Busch to launch the first ever mainstream gluten-free product into the marketplace, Redbridge gluten-free beer.
7. Beyond Celiac is the first patient advocacy organization to adopt a social media strategy, joining Facebook in October 2009 and reaching 100,000 supporters by 2014 then quickly expanding to YouTube, Twitter, Instagram, LinkedIn.
8. Beyond Celiac launches GREAT Kitchens and hosts the first Gluten-Free pavilion at the National Restaurant Association annual convention, resulting in driving restaurant interest in gluten-free offerings nationwide.
9. Beyond Celiac launches the first-ever family testing initiative, Seriously Celiac Disease PSA and the Talk. Tell. Test. campaign.
10. Beyond Celiac, working with the FDA, partners with the best gluten-free product certification in North America, the Gluten-Free Certification Program, so our community can have safe and accurate gluten-free food labeling.
11. Beyond Celiac spearheads a study with a grant from the FDA demonstrating that gluten in medications is a significant issue for the celiac disease community that needs to be addressed, and launches the GREAT Pharmacists training program.
12. Alice Bast and other Beyond Celiac leaders share our needs and concerns with leading policymakers and researchers nationally and internationally at the FDA GREAT3 workshop in Washington DC and the 14th International Coeliac Meeting.
13. Beyond Celiac holds the first multi-disciplinary celiac disease Research Summit, putting patients at the center of research.
14. Beyond Celiac presents our innovative patient engagement model to improve celiac disease diagnosis rates at Stanford Medicine X, an annual gathering about the future of medicine and the role technology plays in improving health.
15. Beyond Celiac creates a patient registry for people with celiac disease and their families, Go Beyond Celiac.
16. Beyond Celiac becomes the first and only advocacy organization to launch a science department and hire a CSO and convene the first annual Beyond Celiac Research Symposium.
17. Beyond Celiac awards grants for three celiac disease research projects and presents our own research on brain fog at the 2019 International Celiac Disease Symposium.
18. The COVID-19 pandemic brings the world to a halt, and Beyond Celiac pivots to provide information to the community. We release surveys through our patient registry Go Beyond Celiac to learn more about how COVID affects the celiac disease community specifically. 
19. Beyond Celiac continues with its dedication to research and awards a grant to a research team from Sheffield, UK, who previously found that gluten can cause brain changes in those with celiac disease.
20. We hosted another Research Symposium, bringing together leaders in research and clinical practice to discuss the future of celiac disease.
21. Bonus—In 2023, we have already granted five research awards, becoming the leading organization funding celiac disease research. The rest of the year is sure to bring even more progress for the research community!

Shaping the Future of our Community

As we continue our journey toward treatments and a cure, we can't help but be filled with excitement and anticipation. What new breakthroughs and advancements will we witness? Which groundbreaking celiac disease treatment currently in clinical trials will finally be approved by the FDA? The possibilities are endless, and we can't wait to witness them unfold! Before we wrap up, we would like to take a moment to express our sincerest gratitude to you, our beloved community. It is your unwavering support and resilience that has fueled our passion for advocating and empowering those affected by celiac disease and non-celiac gluten sensitivity. You are the reason why we do what we do - to ensure that no one ever feels alone or overlooked in their celiac journey. We share your vision of a world Beyond Celiac, where timely diagnosis, proper follow-up, access to safe food, and diverse treatment options are the norm. If you would like to join us in this mission, there are several ways to get involved. You can donate directly to support our work, sign up for our patient registry to contribute to vital research, or attend our events like virtual Town Halls or Step Beyond Celiac 5Ks. Every little action counts, and together, we can make a significant impact in the lives of those affected by celiac disease. Once again, thank you for being a part of our journey. We can't wait to see what the future holds for us and the celiac disease community!

[caption id="attachment_20352" align="alignnone" width="900"] Photo courtesy of Cody Siezega[/caption] A coalition of non-profit organizations from around the globe builds on their Shine a Light on Celiac partnership to raise awareness for celiac disease, an autoimmune disorder that affects one in every hundred people worldwide, by having buildings light up green on May 16. May is Celiac Awareness Month in the United States, Canada, and the UK. The partnership includes Beyond Celiac, Canadian Celiac Association, Celiacos de Brasil, Celiac Disease Foundation, Coeliac Australia, Coeliac UK, Gluten Intolerance Group, National Celiac Association, Coeliaque Quebec, Coeliaque Canada, Hellenic Celiac Society, and Slovenian Society for Celiac Disease, which have come together to increase awareness and education about celiac disease, a condition where the body has an immune reaction to gluten. People with celiac disease must avoid consuming foods that contain gluten, which can be found in wheat, barley, and rye. Untreated celiac disease can lead to anemia, infertility, osteoporosis and certain cancers. To draw attention to this important issue, the organizations are encouraging buildings across the United States, Canada, and around the world to light up green on May 16. Many notable landmarks, such as Niagara Falls, Cristo Redentor (Christ the Redeemer), and the Quebec Olympic stadium will be participating in this initiative. “This partnership is an important step towards raising awareness of celiac disease and the impact it has on the lives of those affected,” said Alice Bast, CEO of Beyond Celiac. “By lighting up buildings in green, we hope to start conversations and encourage people to learn more about this often-misunderstood condition.” Beyond Celiac is also hosting a virtual 5K and a virtual Town Hall in May to raise awareness and to educate the public about celiac disease. These events will be open to the public and will provide an opportunity to get active and will share valuable information about the disease and how to manage it. And, as part of their celebration of 20 years of service to the celiac disease and gluten sensitive communities, Beyond Celiac will be highlighting the advances made in the last two decades in public awareness and research, as well as providing shareable items on social media. All of this is in addition to the joint work with fellow celiac disease organizations. “We are excited to be partnering with other non-profit organizations in our community to raise awareness for celiac disease,” said Melissa Secord, National Executive Director of the Canadian Celiac Association (CCA). “By coming together, we can make a greater impact and help ensure that people with celiac disease get the support and resources they need.” The coalition encourages individuals and organizations to show their support for celiac disease awareness by lighting up their own buildings or wearing green on May 16. For more information about celiac disease and the coalition’s events, please visit shinealightonceliac.org.

https://www.youtube.com/watch?v=qG89qTOYwd4 Reach Beyond Celiac Ambassador Hayden Bishop recently undertook a project to interview people who have celiac disease: what they struggle with, how they manage the condition, and what they hope the future holds. With this video project, Hayden and Beyond Celiac hope that people can better understand the unique burden of this autoimmune disease.

What is Celiac Disease?

Celiac disease is an autoimmune condition that affects at least 1% of the population. Symptoms can be gastrointestinal, neurological, psychological, or even manifest as a rash. Some people have no symptoms at all. Researchers estimate that half of those with celiac disease are currently undiagnosed or misdiagnosed. The only existing treatment is a strict, lifelong gluten-free diet. Managing the diet can be isolating and overwhelming, and in about 30% of patients, the diet is not enough—that’s why Beyond Celiac supports research for additional treatments and a cure. Until the day when we have additional treatments, we’re dedicated to supporting patients not just at diagnosis, but throughout their whole life; a lifelong condition requires lifelong support.

Real Patients, Real Stories

Hayden was diagnosed with refractory celiac disease, a rare form of celiac disease where the body doesn’t respond to the gluten-free diet. With the help of an extremely strict diet of raw foods and immunosuppressants, Hayden entered remission, but remains closely monitored to this day. For people with celiac disease, there’s no such thing as a cheat day—patients must be vigilant about what they consume each and every day. When asked what it was like to interview others with celiac disease, Hayden said, “empowering and comforting [...] I realized I am not alone, and was able to tell them that all the things they thought only they were experiencing, actually many, many people with celiac disease are going through that same struggle.” You are not alone. If you want to read other stories from people with celiac disease or share your own, check out our Voices of Celiac campaign.

At least 3 million Americans have celiac disease, but as many as 50 to 83% of them could be undiagnosed. Awareness of this autoimmune condition is key to getting people the diagnosis they deserve—here's how one teenager is making an impact in her community.

Grace's Journey to Diagnosis

Grace was diagnosed with celiac disease at five years old. She had been suffering from constipation and stomach pains for a couple of years, but when she became increasingly more lethargic, pale and bloated, her parents took her to the doctor for testing. The pediatric gastroenterologist ordered blood work and her celiac disease tests returned extremely high results. A follow-up endoscopy with biopsy confirmed that she did in fact have celiac disease; it also revealed a bleeding ulcer, a complication of the disease. Grace immediately went gluten-free; as a result, her stomach pain disappeared, her abdomen returned to a normal size, her blood test results normalized and her constipation lessened. In short, she felt a lot better!

Activism for Awareness

Grace has now been gluten-free for more than a decade, and all the while she and her parents have been working to raise awareness of celiac disease. For example, in 2012 Grace had a lemonade stand to raise money for celiac disease research. In 2018, then 14-year-old Grace Tate, alongside her dad, Missouri State Representative Nate Tate, wrote a bill that would make the second Wednesday in May Celiac Awareness Day. Grace assisted with writing and filing the bill, as well as pushing for it to be voted on by committees, the House, and the Senate. She also went to each state representative to personally explain the bill and celiac disease. Some already knew about celiac disease or had family members with it, but the majority had never heard of the disease. When the bill made it into the committee stage and Grace was called upon to testify in front of a committee of 10 state representatives, she did so with confidence and determination. Once the bill passed out of committee, Grace was on a mission to see it picked up by the Speaker of the House so that it could be voted on by the entire House. She spent many days in the capital building visit with representatives and the Speaker. After successfully getting the bill on the docket, it was voted on and passed by the House. However, the Senate proved more difficult. For multiple years, Grace worked to get it passed by both the House and the Senate. Finally in 2022 the bill was added to another bill and passed by both the House and the Senate! In August of 2022 Governor Parsons signed the bill into law, making the second Wednesday of May Celiac Awareness Day for the state of Missouri. On January 24, 2023 Grace went to the Capital and had a ceremonial signing of the bill with Governor Parsons. It took five years of dedication and passion for this dream of Grace’s to come true, and her parents and family are immensely proud of her and her desire to education others on this disease.

Celebrating Celiac Awareness Day

Grace wants to ensure that May 10, 2023, the first Celiac Awareness Day in Missouri, is a big event for her hometown of St Clair, MO! In preparation, she's working with local vendors and businesses to set up stands with delicious gluten-free food and information about celiac disease. We encourage everyone to host an event this May for Celiac Awareness Month—big or small, you can make a difference! We thank community members like Grace for leading by example. Our community is stronger when we all work together to raise awareness of celiac disease.

Beyond Celiac is pleased to announce five multi-year grants totaling $1.6M as part of a celiac disease research grant program. The grants fund research at prestigious institutions in five countries, making Beyond Celiac the premier nonprofit funder of celiac disease research worldwide. These grants will support research into non-invasive biomarkers, the microbiome, and restoring immune tolerance to gluten antigens. The projects, researchers and their institutions are: Research Accelerator Grant Awards

• Shed cell transcriptomics for the identification of celiac disease dynamics by Shalev Itzkovitz, PhD, at the Weizmann Institute of Science (Rehovot, Israel) in collaboration with the Schneider Children’s Medical Center (Petah Tikva, Israel)

• Novel Biomarkers of mucosal damage for non-invasive diagnosis and monitoring of celiac disease by Michael FitzPatrick, MRCP, DPhil, (previous Beyond Celiac awardee) at University of Oxford (Oxford, UK)

Established Investigator Awards 

• Identifying predictors for progressive phenotypes of Celiac disease by Rok Seon Choung, MD, PhD, at Mayo Clinic (MN, USA) in collaboration with the Naval Medical Center (MD, USA) and Icahn School of Medicine at Mount Sinai (NY, USA)

• CeliAct(TIV) – Translocation, Inflammation and Virulence: dissecting mechanisms of gluten-microbiota interactions in Celiac Disease by Sónia Gonçalves Pereira, PhD, at the Instituto Politécnico de Leiria (Leiria, Portugal), in collaboration with the Celiac Disease Research Center at Tampere University (Tampere, Finland)

• Preclinical 2D celiac patient-based iPSC-small intestinal epithelial in vitro model by Kati Juuti-Uusitalo, PhD, at Tampere University (Tampere, Finland)

“Beyond Celiac is committed to a competitive process to identify and fund the world’s best and most promising research to accelerate research for treatments and a cure for celiac disease, and to help our celiac disease community members live longer, fuller lives,” noted Alice Bast, Beyond Celiac CEO. “We have committed more than $3M to directly fund celiac disease research in the last several years as part of our comprehensive Science Plan to have treatments toward a cure by 2030,” she added. While continuing its work as a top recruiter for celiac disease clinical trials, Beyond Celiac led a rigorous grant selection process in the last quarter of 2022. The application process was competitive, with review by the members of the Beyond Celiac Scientific Advisory Board (SAB), led by Beyond Celiac Chief Science and Strategy Officer Salvo Alesci, MD, PhD. Working from recommendations by the SAB, final award selections were based on fit with established funding priorities. Members of the SAB who served on the review committee include: 

• Lisa Fahey, MD, is the co-director of the Center for Celiac Disease at Children’s Hospital of Philadelphia (CHOP)

• Benjamin Lebwohl, MD, is the director of clinical research at the Celiac Disease Center at Columbia University

• Dale Young Lee, MD, MSCE, is the director of the Celiac Disease Program and medical director of clinical nutrition at Seattle Children’s Hospital

• Daniel Leffler, MD, is the director of research, Celiac Center at Beth Israel Deaconess, associate professor of medicine, Harvard Medical School, and medical director, Takeda Pharmaceuticals

• Edwin Liu, MD, is the director of the Colorado Center for Celiac Disease at Children’s Hospital Colorado and professor of pediatrics, gastroenterology, hepatology and nutrition, University of Colorado School of medicine

• Stephen Miller, PhD, is the director of the interdepartmental immunobiology center at Northwestern University Feinberg School of Medicine and research professor of microbiology-immunology

• Joseph Murray, MD, is a professor of medicine at Mayo Clinic and a gastroenterologist in the division of gastroenterology and hepatology, department of internal medicine

• Kari C. Nadeau, MD, PhD, is the John Rock Professor of Climate and Population Studies, Chair, Department of Environmental Health at Harvard T.H. Chan School of Public Health

Donors and philanthropists interested in supporting Beyond Celiac research initiatives can direct contributions to innovative projects.

By Amy Ratner, Director of Scientific Affairs Children with celiac disease can grow up normally and be happy and healthy. It takes pre-planning, either by verifying safe food will be available when they go to someone’s house, a school activity, a party or some other event or by preparing food that they can take. There are many examples of children who’ve never let the diet stand in their way from preschool through college.

Fostering Confidence

The best thing a parent can do for a child with celiac disease is convey the message that the gluten-free diet does not have to limit them in any way. Being positive is extremely important. Kids with celiac disease often have a great attitude and deal very well with the fact that there are times when they can’t have some foods the other kids are having. Usually, that attitude is fostered by their parents who make sure preparations have been made so their child does not feel deprived. Food is often less of a big deal to kids with celiac disease than their parents.

Encouraging Follow-Up

Some new research is showing that kids who are diagnosed very young and don’t have symptoms are the least likely as young adults to get important follow-up healthcare, including blood tests that show when gluten is triggering antibodies. Since these kids have the benefit of being diagnosed at a point where less damage has been done by unknown celiac disease and a good chance at recovery, it’s a shame for them to lose ground by neglecting follow-up. A recent study found that children were more likely to get follow-up care as adults if they: are introduced at around 16 years old to the idea that they will eventually need an adult gastroenterologist; have a pediatric gastroenterologist who initiates a plan for a transfer to an adult gastroenterologist; and complete the transfer of care by 18 years old.

A Happy and Healthy Gluten-Free Adult

When she was diagnosed with celiac disease at two years old, I worried that my daughter would not be able to grow up happy and healthy. But she’s now 27, and she went through everything from preschool to college in a perfectly normal way. We decided early on that the diet should not stop her from doing anything she wanted, and that’s how she has lived her life. She participated in activities ranging from Girl Scouts to dance team, went to college far from home and studied abroad in London. Now she’s all grown up and getting married. If your child is newly diagnosed, I have been where you are, and I know how you feel. So, I hope it helps to know that your child will be OK, too.