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Letter from Alice: Celebrating Celiac Awareness Month and 20 Years of Stepping Up for Celiac
As we kick off Celiac Awareness Month, I want to reflect on the incredible accomplishments that Beyond Celiac and our community have achieved together over the last twenty years. For Beyond Celiac, 2023 marks two decades of serving the celiac disease and gluten-free community, and we couldn’t have done it without your support.
From our humble beginnings to receiving a grant from the National Institutes of Health, we’ve grown into a national organization that has significantly contributed to the community. Now we’re the premier patient advocacy and research organization for celiac disease! Let’s talk about some of the many achievements we’ve made over the last decade.
We launched the first-ever National Celiac Awareness Campaign in the early days with Heidi Collins of CNN as our spokeswoman. We also had partnerships with Quest Diagnostics and others, contributing to an increased rate of diagnosis from just 3% in 2003 to up to 50% today. We trained 900 medical professionals and estimated that we led to 6,000 new diagnoses. We also partnered with Anheuser-Busch to launch the first mainstream gluten-free product into the marketplace, Redbridge gluten-free beer.
We’ve made gluten-free food more available and affordable with our launch of the first-ever gluten-free expo, Appetite for Awareness. Beyond Celiac strives to be problem solvers who tackle the issues our community faces, and when we heard from you that this disease needed to be taken more seriously, we launched our Seriously Celiac PSA. We also heard from you that our family members were reluctant to get tested, so we created and launched Talk. Tell. Test., reaching more than 30,000 people in our community and helping them have a serious conversation about celiac disease with their family members. Our videos have had over 1 million impressions on YouTube. We continue to partner with Comcast/NBCUniversal in running a 30-second awareness PSA, made with real celiac disease patients, that has aired nearly a quarter of a million times in the last 3 years.
In addition, our website and social channels have attracted over 25 million visitors. Our YouTube channel alone has garnered 300,000 views, and our Celiac Straight Talk podcast has been downloaded 100,000 times. Moreover, tens of thousands of individuals have participated in our Town Halls, virtual conferences and webinars, seeking accurate and evidence-based information on managing the gluten-free diet amidst the proliferation of inaccuracies surrounding celiac disease and gluten sensitivity on the internet.
We also heard from researchers that they needed more patients to move clinical trials forward for treatments, so we started recruiting for and assisting trials. In the last few years, we have referred thousands of patients to trials across the US and seen a number of trials move on to the next phase of clinical research.
We saw that research for celiac disease was underfunded, so we jumped in and have so far committed $3.1 million for research grants to accelerate research for treatments and a cure.
And we’ve directly contributed to the collection of patient-reported data in the form of 14,693 completed research surveys in our Go Beyond Celiac patient registry. From this and other research, Beyond Celiac has had five abstracts/peer-reviewed studies published/accepted in 2022-2023 alone!
You said your voice wasn’t being heard, so we started collecting stories through our award-winning Voices of Celiac initiative. So far we’ve collected hundreds of diagnosis stories.
These are just a few of our accomplishments, and we couldn’t have done it without YOU and your support! The support of our community keeps us moving toward a cure.
Rest assured, we aren’t slowing down anytime soon. To celebrate 20 years of stepping up for celiac disease, we’re hosting our annual Step Beyond Celiac 5K this month, where we’ll come together virtually to raise awareness and funds for celiac disease research. But that’s not all! We’re also joining forces with other global celiac organizations to light up landmarks green for awareness in a joint Shine a Light on Celiac campaign. Notable landmarks being lit for celiac awareness on May 16 include Niagara Falls, the Quebec Olympic Stadium, and the Christ the Redeemer statue in Brazil! We hope you’ll join us in spreading awareness and getting involved in other ways too.
Additional ways you can help spread awareness are by sharing our social media posts, learning more about Celiac Awareness Month, signing up for our 5K, donating to research, helping light up a building with our Shine a Light campaign, sharing your diagnosis story, or joining a clinical trial. These are fantastic ways to support the celiac disease community and Beyond Celiac.
Thank you for your continued dedication to and passion for raising awareness and advancing research for celiac disease. Happy Celiac Awareness Month!
As always, TOGETHER for a cure,
—Alice Bast
Spring Vegetables and Pancetta with Quinoa Penne
Spring has sprung! Take advantage of in-season vegetables to make this penne with spring vegetables and pancetta. Eat it warm, or pack it in a cooler and eat it at a Mother’s Day picnic.
An empanada is a fried or baked hand pie, common across Latin and South America. Try this gluten-free recipe for lunch or dinner, or make enough to share as appetizers as your next get-together.
This recipe is courtesy of our friends at Gluten-Free Palate.
Noticias sobre investigación
Beyond Celiac Presenting Original Research at DDW 2023
Beyond Celiac to present two original research projects at Digestive Disease Week this May.
Voices of Celiac: Abhishek’s Story
Before diagnosis my life was very uncomfortable. I often got sick, and my stomach problems made me feel very uneasy. It took approximately five to six years to get diagnosed [with celiac disease] after I started having major symptoms. I had been misdiagnosed with other gastric issues.
Get Involved in Research
West Virginia University Celiac Study
Do you have a child aged 10-17 with celiac disease? At West Virginia University, we are conducting a survey study to learn more about your child’s experience with celiac disease! The goal of this study is to understand the way your child copes with their symptoms and dietary restrictions with the desire to create a behavioral treatment to address mental health concerns and improve adherence to the gluten-free diet.
We estimate that the study will take about 30 minutes for you to complete with your child. Some questions will be for you to complete and some will be for your child. You will receive a $20 gift card for your participation. If you have any questions, please email our study team at [email protected]. Thank you so much!
ILLUMINATE-062 Study
Participants are needed for the ILLUMINATE-062 Study, which is looking at the safety and effectiveness of an investigational medication designed to break down gluten in the stomach compared with placebo in those with celiac disease who are on a gluten-free diet. The study will evaluate how well the investigational medication reduces celiac-related symptoms and intestinal damage due to gluten exposure.
Participants who have been diagnosed with celiac, which was confirmed by a biopsy, and have been on a gluten-free diet for at least 12 months are needed. Study-related care is provided at no cost and a travel stipend may be provided.
Antidote Survey
We’re writing to share that Beyond Celiac, Antidote, and SCORR Marketing are conducting a survey to learn what people who have been affected by celiac disease think about clinical research, and we’d love to have your input. By answering these questions, you can help us make clinical trial participation easier for those who would like to take part.
Survey participation will take about 20 minutes; your individual answers will remain confidential, and we will publicly share only the combined, overall results.
PROACTIVE Study
Still experiencing celiac disease symptoms despite your gluten-free diet? This phase 2 clinical trial is testing the investigational medication PRV-015 in combination with a gluten-free diet for ongoing celiac disease symptoms.
Applications Open for the 2023 Beyond Celiac–SSCD Early Career Research Grant
Beyond Celiac is excited to announce the launch of our 2023 Beyond Celiac–Society for the Study of Celiac Disease Early Career Research Grant Award! This grant is designed to support early-career researchers who are committed to advancing the understanding of celiac disease and finding innovative ways to improve the lives of those affected by this serious autoimmune disease.
We believe that investing in the next generation of researchers is critical to driving progress in celiac disease research. Our hope is that this grant will not only support celiac science but also inspire and empower the next generation of celiac researchers.
Allergic Living Spotlight
Living the College Football Dream – with Food Allergy, Celiac, EoE
His whole life he’s navigated health issues: food allergies, eosinophilic esophagitis, celiac disease, asthma, reactive hypoglycemia. But Pete Schuh refused to let any health issue stand in his way. Today, the unstoppable 19-year-old is living out the dream of a lifetime: playing college football.
News, Events & Updates
in 2019, Marisa Stahl, MD, received the Beyond Celiac/SSCD Young Investigator grant to evaluate the impact of celiac disease on the health and quality of life of children identified through a mass screening program. She is currently working on the Autoimmunity for Kids (ASK) study, a free health screening program open to all Colorado children, from one to 17-years-old, designed to detect celiac disease and type 1 diabetes. This is a FREE event!
Beyond Celiac and other non-profit organizations from around the globe are raising awareness for celiac disease by having notable landmarks light up green for Celiac Awareness Month. Notable landmarks such as Niagara Falls, Cristo Redentor (Christ the Redeemer), and the Quebec Olympic stadium will go green on May 16, along with other buildings. Check out shinealightonceliac.org to see the full list!
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. The resulting video is a powerful look at how misunderstood this disease is.
Raise Money for Beyond Celiac on Facebook!
Happy birth month to all our May-born community members! When your big day rolls around, consider raising money for Beyond Celiac so that we can help fund new research by scientists in the celiac disease field. And a HUGE thank you to everyone who’s created fundraisers for us throughout the years! These fundraisers help make our important work possible.