The Beyond Celiac Newsletter
Monthly Newsletter
Note from Alice: Our Plan to Cure Celiac Disease by 2030
Yes, you read that right. Beyond Celiac has unveiled our strategic science plan to change the future for the 3.2 million Americans living with celiac disease. We believe a cure is possible and are putting in place the right people and plans to get there in the next decade.
A cure to Beyond Celiac means real treatment options so those with celiac disease can live healthy lives and eat without fear. As a member of our community, you know that many with celiac disease continue to suffer from the daily burdens of living with this serious autoimmune disease. The lasting symptoms and damage from celiac disease along with the delay in diagnosis and the daily burden of the gluten-free diet are some of the many reasons we made the pivot to focusing on research. And now, after years of solving problems, bringing together experts in Symposiums and Summits, disrupting the status quo (in a good way), creating strategic partnerships and building our science team, we firmly believe that an effective treatment or cure is possible by 2030.
Our plan includes a multi-pronged approach to getting us to the finish line. With your help, our first priority will be accelerating effective treatments that will allow those with celiac disease to eliminate the burden of the disease from their lives. Eventually, we will also focus on research that looks at stopping the disease from ever starting. Our goals are lofty and even disruptive but we believe we can achieve them by creating an outstanding science department and staying laser-focused on the following scientific priorities:
- Evidence Generation: Highlighting the seriousness of celiac disease. Through our registry Go Beyond Celiac and other initiatives, we are collecting and analyzing comprehensive data that you have shared with us on the burden of celiac disease and gluten sensitivity. We will learn more about your journey, your symptoms and how we can best help you live life. With this information, we can increase awareness and make a compelling case for larger investments from government agencies, pharmaceutical companies, biotech and more.
- Translational Research: Accelerating scientific progress toward a cure. We are funding promising research that quickly translates from scientific investigation to clinical use, speeding the development of treatments for patients. We advance science on what you want and need.
- Clinical Trials: Enabling faster approval of treatments. As the nation’s top recruiter for celiac disease clinical trials, we will continue educating our community about the importance of participating in trials. We will also work with pharmaceutical companies to ensure trials are designed with patient perspectives in mind. We thank you for your participation.
- Drug Repurposing: Leveraging existing solutions for our community. We will invest significant resources to identify treatments that have been investigated or approved for other purposes but might also benefit celiac disease patients, reducing risk, cost, and time to market for potential celiac disease treatments. This is a proven model used for the development of the COVID-19 vaccine.
We’ve already begun creating strategic partnerships with heavy hitters such as Janssen and National Minority Quality Forum and have exciting new announcements on the horizon as well.
You can read more about our new science plan here. Thank you for your support of Beyond Celiac and we look forward to reaching our goal with you and for you. We are so excited about what the future holds for those with celiac disease and know that together, we can find a cure by 2030.
Together for a cure,
Alice
Thank you to everyone that Raised Your Voice and ran/fundraised for our Virtual Step Beyond Celiac 5K!
We want to give a huge THANK YOU to everyone who raised their voice over Celiac Awareness Month via donating/fundraising for our fundraising campaign or running our virtual Step Beyond Celiac 5K! We raised over $100,000 in May for celiac disease awareness and research… thanks to YOU!
And thank you to our 2021 Virtual Step Beyond Celiac 5K Sponsors:
Gluten-Free Cooking with Chef Oonagh Williams
Snow Queen Snow Balls
So very easy, quick to make and freeze, and naturally gluten-free. It’s basically whipped cream and crushed meringues frozen. This is truly a dessert made in heaven with the slight crunch from the meringues, the mild almond liqueur flavor and the punch of flavor from the raspberries.
Salmon Rillettes and Smoked Salmon Spread
Try a nutritious, delicious, and easier alternative to a salmon rillette by making Chef Oonagh Williams’s salmon pâté (spread). It has a very mild, subtle taste, and can be paired with crackers, cheese, bread, salad greens, and roasted vegetables.
About Chef Oonagh Williams
Oonagh Williams holds a culinary arts degree and spends her time cooking and educating the public on gluten- and allergy-free diets. She herself has celiac disease and food allergies. She teaches cooking classes, hosts dinner parties, and offers one-on-one help. Buy her Delicious Gluten-Free Cooking e-bookand connect with her on Facebook.
Research News
Dating with celiac disease doesn’t read like a romantic novel
A new survey reveals dating difficulty for those who have celiac disease. One in five said the overall dating experience is not enjoyable. Nearly 40 percent are uncomfortable on a date when they have to explain their need for gluten-free food to restaurant servers. Nearly 30 percent take risks when eating and eight percent have eaten gluten knowingly.
Immunogenx, Inc. Continues Latiglutenase Development and Commitment to Celiac Disease Research with the Solutions for Celiac Study
ImmunogenX, Inc. has been committed to studying latiglutenase as a potential treatment for celiac disease since they acquired the drug in 2016. In spring 2019, the company launched CeliacShield™, a Phase 2 gluten-challenge study that recently concluded. Initial analyses show participants who received latiglutenase experienced significant reductions in abdominal pain, bloating, and fatigue compared to participants on placebo. Latiglutenase development continues and an ongoing Solutions for Celiac™ clinical study is actively recruiting participants.
Read more research news on our Research News Feed
Clinical Trials
ACeD Study
Do you, or someone you know, have celiac disease? The ACeD study is looking for volunteers with celiac disease to participate in phase 1 clinical trial testing the investigational drug KAN-101.
Requirements:
- 18-70 years old
- Biopsy-confirmed celiac disease
- On gluten-free diet for at least the last 12 months
Get More Information
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
Learn More
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
Solutions for Celiac Study
The Solutions for Celiac study is researching a drink-based study medication and its ability to reduce symptoms of accidental gluten exposure. Latiglutenase is a study medication designed to break down gluten into inactive pieces in the stomach to protect people with celiac disease. No uncomfortable biopsies or injections.
Locations: Chattanooga, TN | New York, NY | Chesterfield, MI | Rochester, MN
Learn More
Allergic Living Spotlight
A Gluten-Free Take on Ancient Grains
Curious about what the term “ancient grains” actually means, and whether or not you can eat them? Read more about the history, nutrition, and gluten-free status of these grains.
News, Events & Updates
Beyond Celiac Outlines Plan to Accelerate a Celiac Disease Cure by 2030
We at Beyond Celiac, the leading catalyst for a celiac disease cure in the United States, are committed to addressing the many current barriers to a cure through four scientific priorities: evidence generation, translational research, clinical trials and drug repurposing. By addressing these barriers we can accelerate research for a celiac disease cure.
Beyond Celiac Celebrates Celiac Awareness Month by Raising Community Voices
In May, Beyond Celiac joined together with the celiac disease community to amplify, empower and engage positive voices around the country in celebration of Celiac Awareness Month. We successfully launched an Ambassador Program to expand local reach across the nation, encouraging those with celiac disease to share their experiences and create grassroots change in their communities. One of our most successful campaigns yet, we raised above and beyond our goal with the help of a generous donor challenge!
Celiac Straight Talk Episode 30: Finding Strength after Celiac Disease—An Interview with Gracie Hunt, Miss Kansas USA
In this episode of the Celiac Straight Talk podcast, Beyond Celiac CEO Alice Bast sits down with Miss Kansas USA Gracie Hunt as she recounts her transition from competitive athletics to the world of pageantry, and how her celiac disease journey has influenced her decisions along the way. This introspective conversation on unwanted, unexpected change and the stigma surrounding celiac disease has insights for anyone struggling to come to terms with a life that they could never have predicted. .
Beyond Celiac Town Hall—A Conversation with the National Minority Quality Forum (NMQF)
On May 27, 2021, at 1 PM ET, our Beyond Celiac Chief Scientist and Strategy Officer Salvatore Alesci, MD, PhD sat down with Mary Stober Murray, MPH, NMQF Vice President of Collaborative Action Networks, and talked about how to address disparity and diversity in celiac disease. If you missed the live event, you can watch a recording of the event on our Town Hall page, under the “Past Town Halls” section.
Raise Money for Beyond Celiac on Facebook!
Happy birth-month to all our June-born community members! When your big day rolls around, consider donate to Beyond Celiac so that we can help fund new research scientists in the celiac disease field. And a HUGE thank you to everyone who’s created fundraisers for us throughout the years!
