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Letter from Alice: How We’re Creating a World Beyond Celiac
We heard you. We at Beyond Celiac are working tirelessly every day to accelerate research and reduce diagnosis time. Our goal is to expedite a world beyond celiac.
Our community is at the top of our minds all the time. Our work is to help advance treatments and eventually a cure so that we can eat without fear and live life to the fullest. Study after study has shown that the gluten-free diet is not enough; that friends and family members may not take your diagnosis seriously; that your concerns with psychological and neurological symptoms are being overlooked; that many of you are suffering, waiting years to be diagnosed.
That’s why we invested significant time and resources into working with our community to develop our patient registry Go Beyond Celiac, which now collects important patient data to better help researchers and clinicians understand celiac disease and push their scientific efforts forward. Last year alone, Go Beyond Celiac participants completed 10,000 surveys, allowing us to get a real glimpse into what is important to you and what you truly experience. The only way we are going to understand celiac disease and get to a cure is by studying it and listening to those who live with it every day.
Our science team and scientific advisory board created and is implementing the only transformational patient-centered science plan in the celiac disease space. It’s focused on accelerating solutions so that we can live our best lives, free from worry about every bite. The work of our science team includes important biotech and pharmaceutical partnerships, recruiting for clinical trials, and the Beyond Celiac grant program. We are actively encouraging study in the field of celiac disease by offering $800,000 in funding, making it an interesting and viable career path for the best and brightest.
Additionally, we are regularly updating our research news feed with the latest information, such as a recent study finding that the risk of developing cancer with celiac disease is small and limited to older adults and news on therapies currently in clinical trials.
Beyond Celiac has demonstrated that we can change the future. We did it already by ensuring that gluten-free food is readily available and more affordable. There was a time when those with celiac disease couldn’t get a loaf of bread or a slice of pizza. Now we have access where we live, work, and play.
We are also expanding our own research. Our work on brain fog was groundbreaking, and now we’ve partnered with the National Minority Quality Forum to uncover diversity and disparities in celiac disease diagnosis. Preliminary findings will be presented at Digestive Disease Week this year, the premier conference for gastrointestinal research.
All of this is just a part of what we do each day at Beyond Celiac. Our mission is to unite with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. Our strategic approach to targeted research aims to produce an effective treatment or cure by 2030. However, we can’t do any of this without you. Please consider giving today to help accelerate our work and get us closer to a cure.
We thank you in advance for your commitment to our cause.
Together for a cure,
Alice Bast
