The Beyond Celiac Newsletter
Monthly Newsletter
Note from Alice: Together for a Cure
“If you want to go quickly, go alone. If you want to go far, go together.”
—Often quoted, origin unknown
Words matter. Often I visit with members of our community and talk about the work that Beyond Celiac is doing to connect our community with scientists to accelerate research. That’s why we’ve updated our tagline and logo to more accurately reflect our work: Together for a Cure.
We have the unique opportunity and responsibility to represent the voice of the celiac disease community to the research community, to inform you about the latest developments in the field, and to create opportunities for people with celiac disease to be actively involved.
A lot of thought and discussion went into this new tagline. In the last few years, we have pivoted to accelerating research for treatments and a cure for celiac disease after studies began to show that the gluten-free diet is not enough and we heard loud and clear from our community that you wanted to eat without fear. Our old tagline no longer encompassed our organization’s focus on celiac disease research and science. We now have an aggressive plan and a specific strategy for forging pathways to a cure.
We have our sights set on a cure for celiac disease. With this in mind, we created a science team and a science plan, becoming the first celiac disease organization with a Chief Scientific Officer, Marie Robert, MD, launched Go Beyond Celiac (and its new app!) and began funding research grants.
But the truth is, we can’t do this by ourselves. A cure will come by working together. That means that you play a huge part in the growing understanding of this disease. Researchers need you to share your experiences and to participate in research trials. Together we can fund more researchers and studies through grants and programs. Together we can race to raise funds at Step Beyond Celiac events. Together we can guide each other through the ups and downs of living with this disease (as well as our latest gluten-free finds!) on our website and social pages. Together we can share knowledge with Beyond Celiac videos, symposiums and summits.
Together we will reach our goal while staying true to our vision—A world in which people with celiac disease can live healthy lives, free from social stigma and fear of gluten exposure—A World Beyond Celiac.
For the last 15 years, we’ve been in this together, and now we’re together for a cure.
To living life Beyond Celiac together,
Alice Bast
From the Chief Scientific Officer (CSO): Marie Robert, MD
Scientists, physicians and patients do a lot of waiting when it comes to research – for studies to be designed, for clinical trials to get underway, for a treatment to be approved, for a drug to be available to prescribe, for that drug to work in relieving symptoms and making life better.
That’s why I’m so happy to report on some specific actions that have come out of the commitment of Beyond Celiac to accelerating the search for new treatments and a cure.
We just awarded nearly $450,000 in research grants to two deserving scientists working on cutting edge studies that bring us closer to the day when the wait is finally over. The Established Career Award was presented to Paul Klenerman, PhD, professor of gastroenterology at the University of Oxford, Oxford, England, and the Pilot and Feasibility Award was presented to Jocelyn Silvester, MD, PhD, of research at the Celiac Disease Program at Children’s Hospital, Boston.
When Beyond Celiac formed its Scientific Advisory Council (SAC) last year, our goal was to develop a strategic science agenda to target ideas having the greatest promise of leading to therapies. Through the Beyond Celiac Granting Program, we carried out a vigorous grant review process in which top-notch scientists selected top-notch research projects to fund.
Dr. Klenerman, an immunologist who has previously worked on HIV and Hepatitis C, was chosen, in part, to attract new scientists to the field of celiac disease to expand the way we think about how it might be treated and cured. He will focus on a new kind cell that works as one of the body’s disease-fighting soldiers. The cell is found in the inner gut lining and has a name that is easy to remember – killer CD8 T-cell.
Dr. Silvester, who is well known to those who pay attention to celiac disease research in the United States, is going to address the urgent clinical and research need for improved methods to assess celiac disease activity in small intestinal biopsies.
When the SAC was deciding which studies we should fund, we gave top priority to additional research into the role of T-cells in driving the immune response in celiac disease. Choosing a research focus is challenging when there are many promising studies to consider, and we are thrilled to have chosen two outstanding projects that align with patients’ needs and the goals of Beyond Celiac. Both studies will involve RNA sequencing, a next-generation area of science that may pry open some of the mysteries of celiac disease.
At Beyond Celiac, our mission has evolved to one of advancing the science of celiac disease because we firmly believe that with a strategic approach to funding focused research, an effective treatment or cure may be possible within the next 15 years. To accomplish that goal, we are laser-focused and addressing the many barriers currently exist.
We know that the first need in achieving a cure for celiac disease is adequate funding. The second, related need is equally important: We need to maintain our focus on research that is practical and patient-centric. We have designed our scientific plan, which you can review here, accordingly.
As a lean organization, we carefully target our efforts to advocate for and accelerate the best ideas in celiac disease research. That’s why we selected Drs. Klenerman and Silvester. We are careful stewards of the money our community entrusts to us, supporting the approaches that are most promising for patients, as we work towards a cure.
The awarding of these grants, an act that could not have occurred without the support of the celiac disease community, helps get us closer to the day when we are no longer talking about the wait for new treatments and a cure. Instead, we’ll be celebrating because that day has arrived!
Gluten-Free Cooking with Oonagh
Cauliflower Fried Rice
A yummy side or main dish that helps you get your daily dose of veggies!
Coconut-Rum Chocolate Pie
Delicious!
About Chef Oonagh Williams
Chef Oonagh Williams holds a culinary arts degree and spends her time cooking and educating the public on gluten-free and allergy-free diets. She herself has celiac disease along with food allergies. When not writing or speaking, she teaches cooking classes, hosts dinner parties, and offers one-on-one help. Buy her Delicious Gluten-Free Cooking e-book; like her Facebook page; and connect with her for help in following a special diet.
Research News
Help Build a Brighter Future for Those with Celiac Disease
Despite best efforts to follow a strict gluten-free diet, 2 out of 3 people with celiac disease are regularly exposed to gluten. Help advance scientific research by joining the CeliacShield Study, an NIH-funded study assessing an investigational drug designed to protect the small intestine after gluten exposure.
RNA Sequencing Plays Role in New Research Funded by Beyond Celiac
Scientists awarded Beyond Celiac research grants totaling nearly $450,000 will conduct two groundbreaking celiac disease studies, one into killer cells that cause the actual tissue damage in the intestine and the other into a more exact way to measure intestinal damage revealed in a biopsy.
Drug to Treat Celiac Disease Gets to Furthest Ever Stage of Study
The first patient in first Phase 3 celiac disease clinical trial has been given the first dose of a drug to treat celiac disease. Innovate Biopharmaceuticals announced last month that is has given the first dose of larazotide acetate to a study participant. Larazotide acetate is the first celiac disease drug to get to a critical, large-scale Phase 3 clinical trial.
News, Events & Updates
Step Beyond Celiac
Join us on 9/29 in Kansas City or 10/12 in Dallas for our next Step Beyond Celiac 5Ks! Step Beyond Celiac Events raise funds to support Beyond Celiac research efforts. Register for KANSAS CITY, DALLAS or the VIRTUAL WALK.
***The deadline for T-SHIRTS for KC and the Virtual Walk is 9/6; for Dallas, it’s 9/15. Register today to be sure to get a shirt!
Beyond Celiac Research Summit
On November 15, Beyond Celiac is holding its 2nd research summit. The event, Getting over the Peak: The Final Ascent to Realizing Therapies in Celiac Disease, will bring together scientists, patients, drug developers, patient advocacy leaders, health care insurance and FDA representatives. Learn more and register for the webcast.
Go Beyond Celiac Gala & Concert
Raise Money for Beyond Celiac on Facebook!
Happy birth-month to all our September-born readers! When your big day rolls around, consider “donating” it 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 has created Facebook fundraisers for us this year!
Please join us on October 24 for an unforgettable night of opera benefiting Beyond Celiac! This year’s gala will pay tribute to Carole Haas Gravagno, recipient of the 2019 Beyond Celiac Samuel Gee Award, and celebrate her achievements along with the