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Note from Alice: Until There’s a Cure
May is Celiac Awareness Month. Every year we celebrate with eye-catching campaigns and exciting events, making a big splash of awareness for this serious genetic autoimmune disease. Given the impact of COVID-19, things look a little different this year. To that end, we are pleased to take a leadership role in the international #CeliacUnited/#CoeliacUnited social media campaign that brings together celiac-related organizations from across the globe. And while we’re pivoting and making adjustments to deal with the Covid-19 pandemic, our mission continues no matter what.
Beyond Celiac and our community are united in sharing messages of solidarity, health and, most importantly, hope. With your help, Together we’re improving early and accurate diagnosis. Together we’re propelling research for future treatments and a cure. Together we’re providing hope for a future in which we can live and eat without fear and to a day when the uncertainties of today are far behind us.
To make all this happen, we are still moving Beyond Celiac. We have heard from you and understand that you and your family members want to be able to eat without fear Our commitment remains and we will move toward our mission no matter what. We are continuing to accelerate research for treatments and a cure for celiac disease. Even in the face of adversity, we continue with urgency and determination.
Now, like always, we’re here for you, which is why we created our COVID-19/celiac disease hub with our Science Team to keep you up to date. We’ve also added two surveys about coronavirus and celiac disease to Go Beyond Celiac to help researchers better understand these two diseases. You are also counting on us for the latest information and to accelerate treatments and a cure for this serious genetic autoimmune disease, which we continue to share in our Research News feed and research e-blasts. We are also continuing to fund grants for the most important celiac disease research—and in fact, one of our 2019 grantees has been tapped to study COVID-19 applying some of the same tools he’s used to study celiac disease. This further illustrates the significance of the research we are funding in terms of being the key to unlocking other diseases—especially other autoimmune conditions.
This Celiac Awareness Month, we ask you to help spread the word about celiac disease by sharing the materials on our Celiac Awareness Month page and social channels. We also invite you to join us in our VIRTUAL Step Beyond Celiac 5K. You can walk or run from anywhere, anytime during May. Proceeds from this race go toward our research efforts.
Finally, if you can help, please donate or set up a recurring monthly donation. Each new recurring monthly donation—no matter what the amount—will be matched with a $25 gift from a generous donor! Visit our donation page and select “donate monthly” and type in any amount. Our goal is to get 200 new monthly donors this May! If you are reading this message, it means that you are interested in our work. Can we count on you?
Together we can help our community weather this storm and come out stronger on the other side.
Together (apart) for a cure,
Alice
Upside Down Apple Tart
Chef 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 often teaches cooking classes, hosts dinner parties, and offers one-on-one help. Buy her
Headlines about this recent Swedish study focused on a 21 percent increased hazard ratio for celiac disease patients, but Dr. Lebwohl emphasized that the absolute risk, which was about 1 more person in 100 over 10 years is more practical. “We know that the great majority of people with celiac disease live long and healthy lives,” he said.
Scientists are following the long term development of celiac disease in multiple studies that look at children at risk for celiac disease. Researchers from the Colorado Center for Celiac Disease at Children’s Hospital Denver are collaborating with the Barbara Davis Center in work on the Diabetes and Autoimmunity Study of the Young (DAISY), the Environmental Determinants of Diabetes in the Young (TEDDY), and Autoimmunity for Kids (ASK). The studies screen children for celiac disease, type 1 diabetes and other autoimmune conditions.
We’ve added two new important surveys to our Go Beyond Celiac database and app! These surveys will collect critical data on celiac disease and the new coronavirus COVID-19. The first survey will collect information on how the coronavirus is impacting our community during this unprecedented time, as well as information on managing celiac disease during a pandemic and changes in habits. The second new survey covers those with celiac disease who have been diagnosed with COVID-19 so that we can better answer questions about how having celiac disease affects risk levels, treatment and more.
While social distancing, we’re engaging with the community via our virtual book club. Last month