June 2020

Together with you, we at Beyond Celiac are adjusting to changes brought by COVID-19 that we would not have imagined possible before the pandemic. 

But as we have made adjustments, we have always kept our sights on your need for healthy lives, free from social stigma and fear of gluten exposure. COVID-19 raised new questions about a healthy life and what having this specific autoimmune condition might mean. 

Many in our community, myself included, urgently needed to know if we were at greater risk of contracting or recovering from COVID-19. Fortunately, our Chief Science and Strategy Officer Salvo Alesci, MD, and our Chief Scientific Investment Officer Ken Kilgore, PhD, were quick to provide the latest and help us accurately inform you about how and when celiac disease might affect our risk. Social media and our website are more important tools than ever in connecting with you and providing you with the resources you need in these quickly shifting times. 

In early April, due to our community’s need for evidence-based answers, we were the first organization to begin collecting data from people with celiac disease about how COVID-19 was impacting your well-being. Through one survey on Go Beyond Celiac, our patient database, we are collecting your real-world experiences managing celiac disease and the gluten-free diet as you navigate stay at home orders and other restrictions. A second survey is gathering information from those who have had COVID-19 infection and could be helpful to researchers as they seek to determine the infection rate and course of disease among celiac disease patients. Please continue sharing your views and voice. 

This pandemic is a challenge for all of us. And as a nonprofit, we’ve had to shift and reorient how we stay focused on being a catalyst for a cure for celiac disease. We have gone through some changes. We were about to move from our office and were on the verge of signing a lease for new space in March. It became apparent that work-from-home orders were about to be issued, so we pivoted and saved the overhead on the cost of office space that we wouldn’t be able to occupy for a long time. We are working at home, like many others, diligently pursuing initiatives to find new treatments and a cure. Our two new scientific officers joined Beyond Celiac just before the pandemic hit, but that has not stopped them from giving our important science plan new focus and energy. We are lucky to have their expertise, as we quickly found out when questions about COVID-19 started coming. We are hopeful that our Step Beyond Celiac 5Ks, planned for a growing number of cities this year, will move ahead – albeit with appropriate considerations for social distancing to keep those who want to participate safely. We are all grateful and in awe of the many runners and walkers who raced with us virtually during Celiac Awareness Month in May, with nearly 500 of you lacing up your sneakers and taking part. 

I am ever mindful that the coronavirus pandemic is devastating to people who are or have become ill with COVID-19, to those who have lost family members and to those who have lost their livelihoods. It is likely that we will all face long-term changes in the way we conduct our daily lives as a result of the pandemic. And, it is truly heartbreaking that in 2020, we also find ourselves still struggling with issues of racial disparity. In the midst of it all, we are striving to support our entire community, and together we will find a cure for celiac disease. 

While it may feel like our world has turned upside down, I want to reassure you from the bottom of my heart that Beyond Celiac will not lose its focus on making life better for people with celiac disease and their families by leading the way to advancing research for treatments and a cure. Stay safe. Stay engaged! 

Together (apart) for a cure,

Alice