Welcome to the fourth installment of my Celiac Series! Today, I will be featuring Claire Baker, Director of Communications and New Media for Beyond Celiac. The Beyond Celiac website helped me when I was first diagnosed in 2012, and I am sure they will help you either in the present or the future. They have valuable information and are funding research for a cure!
Claire was diagnosed with Celiac Disease in 2010 at the age of 46. She said, “I started blogging about my experiences and doing restaurant and product reviews but had a full-time job, so it was definitely a sideline interest. I have a long career in nonprofit management doing all sorts of things. One day, when I was on the NFCA website, I saw that the organization was looking for a communication director and I applied.” Claire was the perfect candidate and has been working there the last five years.
Now, what is the NFCA you may ask? Before Beyond Celiac was rebranded, it went by the name of National Foundation for Celiac Awareness. Founded in 2003, Alice Bast, current CEO, “established the NFCA as the first patient advocacy group dedicated to improving the environment in order to drive diagnosis from a mere 3% and enable access to the only treatment for Celiac Disease: gluten-free food.” Alice had “her own devastating experience of delivering a stillbirth, suffering multiple miscarriages and giving birth to a baby born at only 3 pounds as a result of undiagnosed Celiac Disease.” She created NFCA to spread awareness and help others have better pregnancy experiences. “The goal was to create a leading organization that would initially spread awareness to drive diagnosis of Celiac Disease on a national level and, ultimately, raise funds for research to better understand the causes, mechanisms and treatment of Celiac Disease.”
The NFCA worked tirelessly to bring certified gluten-free food to stores as well as to train service professionals on how to properly prepare Celiac-safe meals. After learning that Celiacs on a 100% gluten-free diet were continuing to struggle, they decided to change their mission, and with it, their name.
Beyond Celiac was born in 2015 to reflect the organization’s new priorities. In addition to supporting education and empowerment, Beyond Celiac pivoted to include accelerating research for treatments and a cure. The effects of Celiac Disease do not just disappear post-diagnosis – emotions play a large role in this daunting lifestyle change. Beyond Celiac continues to raise awareness about CD, and with leadership from their Chief Scientific Officer, Marie Robert, MD, and input from their Scientific Advisory Council, they fund “the most promising research through direct grant making.” To read more about their science plan, click here.
Many people with Celiac Disease want to help find their cure but aren’t sure how. Here are the best ways you can contribute to Beyond Celiac: share their fun and informative content, visit Go Beyond Celiac and fill out the surveys for their patient registry (my Celiac Series in 2018 explores how different all our symptoms can be!), inform yourself and your family with the Research Newsletter, and help fund the research.
Beyond Celiac is hosting its 3rd Annual Beyond Celiac Research Symposium on May 30th if you want to watch it live or later (sign up here). You can even start your own fundraisers, such as the Step Beyond Celiac 5k taking place throughout the country. If you live in the Philadelphia area, Beyond Celiac needs both runners/walkers and volunteers for the Step Beyond Celiac event at the Philadelphia Zoo. If there isn’t a race in your area, you can participate virtually!
Beyond Celiac is excited to share that “more than a dozen therapies are far enough along to be in clinical trials, and one of them is entering Phase 3…there are still many steps to go before a treatment can become available, but [they] feel like momentum is building…[they] are optimistic that the learnings that are coming about in the field of Celiac Disease will help unlock all of autoimmunity – benefitting the estimated 50 million Americans living with an autoimmune disease.”
Business Advice from Claire Baker:
“Changing the name of an organization can be a bit of a nail-biter…Hardly anyone could remember all of the words in the right order for National Foundation for Celiac Awareness, it didn’t reflect our vision, and we didn’t have a website address or social media handles that matched at all…We kept at it, got lots of opinions, and ultimately had to take the plunge. Beyond Celiac works on so many levels and time has been the test – people get it. They remember it. It works."