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Note from Alice: 3 Critical Ways Beyond Celiac Propelled Us Closer to a Cure This Year
Last October, Beyond Celiac planted its stake in the ground that we would drive research for treatments toward a cure by 2030. Today, I want to share with you three of our big accomplishments from the last 12 months and why we have, with your support, taken each challenge on.
1. We’ve made major investments in moving research more quickly from the lab straight to you.
Through this work, we’re advancing the research process so that the benefits can reach our community more quickly and they can eat without fear.
We are directly investing $1.5M in a number of research projects that we hope will lead to strategies to identify celiac disease earlier, reveal that celiac disease affects much more than the gut, and propel the development of potential treatments for all symptoms, not just those GI-related, by understanding which cells to target.
Why it matters: Diagnosing earlier, understanding when and why celiac disease becomes active, development of a non-invasive diagnostic test, and understanding what the full impact of celiac disease is on various systems in the body will reveal significant clues to speed progress for treatments beyond the gluten-free diet. Better understanding of celiac disease may also enable us to prevent it from being triggered altogether. Investing in a variety of lines of inquiry gives us more “shots on goal”—approaching celiac disease from multiple directions will yield more chances to score and improve the lives of people in our community .
- We’ve taken a giant leap forward in finding where celiac disease is hiding.
Through this work, we’re revealing where missed diagnosis occurs to help remove obstacles from the regulatory process.
With our Health Disparities and Diversity Project and partnership with the National Minority Quality Forum, we are on the ground floor of identifying missed diagnoses based on geography, race and economic status. Early indications suggest that celiac disease diagnoses are frequently missed in large parts of the country, and within key racial and economic groups.
Why it matters: Everyone living with celiac disease deserves a fast and accurate diagnosis so that they can live longer, better. Further, as noted by the FDA, “Ensuring people from diverse backgrounds join clinical trials is key to advancing health equity.” The FDA is the regulatory body that determines if and how quickly potential treatments move along the process toward approval. It is important that we work to reduce and remove any obstacles, including lack of diversity in celiac disease clinical trials, from the regulatory process so that we can meet our goal of treatment options toward a cure by 2030.
- We’re speeding up clinical trials.
Through this work, we’re reducing barriers and accelerating participation in clinical trials.
With our Go Beyond Celiac patient registry and database and by working directly with clinical trial partners, Beyond Celiac has been able to connect hundreds of community members who are interested in and qualified for research projects to specific clinical trials.
Why it matters: In 2021, nearly a dozen different celiac disease treatments are in clinical trials—more than ever before—including the first-ever phase 3 clinical trial. Without input from our community, studies may not take into account issues that would prevent people from signing up. Without people with celiac disease who meet the criteria to participate, research slows and can even be halted. Beyond Celiac informs and connects, therefore speeding the process for treatments toward a cure.
We could not have come so far so fast without the commitment from our community, and for that I thank you. Together we face the challenge of staying healthy from day to day, and also make investments and commitments that will reap great benefits for the future. With you, we will continue to lead the charge for treatments and a cure. By supporting our work, you’re leaving your mark on a future Beyond Celiac.
Together for a cure,
Alice
Creamy Sausage Cauliflower Gnocchi
A creamy and tasty one-pot meal made with chicken sausage, cauliflower gnocchi, spinach, in a creamy Italian coconut milk base sauce. This recipe is made with gluten-free Jones Golden Brown® Chicken Links and provided by our friends at Jones Dairy Farm.
Chocolate and pumpkin is a combination to die for. Try these Halloween pumpkin bars for a sweet treat that will make everyone ask for more: no tricks here!
Beyond Celiac PSA Wins Award
In January 2020, Beyond Celiac produced a Public Service Announcement advertisement to inform the public about celiac disease. The ad played on Comcast Channels and for Hulu subscribers across the nation (and will be running again soon thanks to a generous gift of airtime from Comcast.) This month we learned that this informative advertisement, featuring real people with celiac disease, won the 2021 National Health Information Award’s Silver in Health Promotion/Public Service Ad. Thank you to everyone who helped make this ad possible, including our communications team with special kudos to Assistant Director of Digital Media, Maria Luci, the video team at Cinema Quilt including producer Melody Tash and the film crew, and of course, the many people with celiac disease who volunteered their time to be the “talent.” Congratulations to you all!
Become a Reach Beyond Celiac Ambassador
Reach Beyond Celiac Ambassadors empower the celiac community by providing outlets to share experiences, spread positivity and create change in their communities.
Applications are still open for our next cohort of Reach Beyond Celiac Ambassadors! Our Reach Beyond Celiac Ambassador program is made up of motivated volunteers who focus on inclusion, establishing personal connections and building supportive networks for those with celiac disease and gluten sensitivity at every stage of life. The deadline to apply for this exciting role is October 11.
Thank YOU—Step Beyond Celiac 5k and Making Connections!
We wanted to say a giant thank you to everyone who donated to our September Making Connections fundraiser and to everyone who participated in and fundraised via our Step Beyond Celiac 5K! Both campaigns met their fundraising goals and we had hundreds of runners across America stepping 3.1 miles closer to a cure with us! The funds raised between these two events will be going to research projects and grants to accelerate science toward treatments and a cure. Thank you for helping us make this important work possible!
Noticias sobre investigación
Children diagnosed with celiac disease through screening report improved quality of life
Children who had no symptoms but were diagnosed with celiac disease as part of a mass pediatric screening program reported a better quality of life overall after a year on the gluten-free diet, preliminary results of a study funded by Beyond Celiac show.
Monoclonal antibody investigated as celiac disease treatment
An international group of researchers are investigating a monoclonal antibody that has the potential to treat celiac disease by stopping the activation of cells that identify gluten as an invader.
Ensayos clínicos
CeDLara Study
Still experiencing symptoms on a gluten-free diet? The CeDLara Study is currently enrolling qualified patients into their phase 3 study to assess a potential therapy for celiac disease. This study is being conducted to determine if the drug reduces symptoms of celiac disease in patients who are on a gluten-free diet. You may qualify to participate in this study if you:
- Are 18 years old or older
- Are biopsy diagnosed with celiac disease
- Are actively experiencing symptoms related to celiac disease such as abdominal pain, abdominal cramping, bloating or gas
- Have been on a gluten-free diet for at least 6 months
PROACTIVE Study
Are you still experiencing celiac disease symptoms despite your best efforts to follow a gluten-free diet?
The PROACTIVE Celiac Study is looking for people between the ages of 18 and 70, who have biopsy-confirmed celiac disease and have been on a gluten-free diet for at least the last 12 months. You will not be asked to ingest gluten in this study. The goal of this phase 2 clinical trial is to test the safety and effects of the investigational medication PRV-015. In combination with a gluten-free diet, PRV-015 aims to reduce symptoms and intestinal inflammation caused by accidental gluten exposure.
Learn More
See if You Qualify
Use referral code: REFBC
Allergic Living Spotlight
Labeling Bill Aims to Simplify Adding Top Allergens, Gluten Sources
A comprehensive food labeling bill recently introduced in the United States Congress would make it easier to require labeling for additional food allergens in the future. This article gives an overview of FLMA, how it differs from previous legislation and how it will help consumers make safer decisions about the food they eat.
News, Events & Updates
With Halloween approaching, now is a good time to review which candies are gluten-free. Make sure you and your kiddos have a spooky, sweet and safe holiday!
Town Hall: Eating healthy on the gluten-free diet
We had a wonderful conversation with Dietitian Julie Kennedy and gluten-free Consultant and Educator Beckee Moreland at our most recent town hall, discussing things like managing costs of the gluten-free diet, reading labels for sneaky ingredients, and reclaiming the joy of eating after diagnosis. You can watch a playback on our website.
New Episode of our Podcast Celiac Straight Talk
In this episode, four of our Reach Beyond Celiac Ambassadors discuss how a celiac disease diagnosis can affect family relationships and how to navigate eating safely when some family members just don’t seem to understand your diagnosis. Check out “Episode 34: Family Matters.”
This virtual two-day event will feature 23 educational and empowering sessions and over 50 autoimmune experts including physicians, nurses, policy experts and, of course, patient advocates (who will make up the majority of speakers). Beyond Celiac will have a booth both days.
Shop Chartiably with Amazon Smile
You can donate to Beyond Celiac without spending an extra dime! When you buy eligible items on Amazon Smile, .5% of your purchase will be donated to Beyond Celiac at no extra cost to you. Here’s how:
- Visit smile.amazon.com.
- Search for “Beyond Celiac” in the search bar on the bottom right-hand side of your screen.
- Select Beyond Celiac.
- Start shopping!
Raise Money for Beyond Celiac on Facebook!
Happy birth month to all our October-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.