Note from Alice: A Clear Vision for 2020
I have a good feeling about 2020; I believe this is going to be a big year for the celiac disease community. There is so much going on in the celiac disease world that would have seemed like a dream when Beyond Celiac was founded in 2003. Our own 2020 strategic plan involves a number of really exciting initiatives that I can’t wait to share with you, especially since YOU are going to be involved in all of it!
That’s right, this year we’re involving YOU more than ever before—especially when it comes to science. One of the biggest takeaways from our 2019 Research Summit was the need for patient participation in research AND the need for patients to be listened to and involved more directly in the study process. We heard from both the researchers and the patients in a number of eye-opening panels and because of our learnings, we are expanding our involvement in recruiting for clinical trials and assisting those who are setting up trials to create patient-focused study protocols.
If you’re interested in signing up for a clinical trial, be sure to register for Go Beyond Celiac, our patient database collecting information on celiac disease that’s critical to moving research forward. The more scientists and doctors know about this disease, the more they will be able to help. Go Beyond Celiac offers an easy way to share your celiac story through important data-collecting surveys. This year, we will be adding even more surveys and sharing important insights gleaned via the Go Beyond Celiac app and our new Insights News Briefing (those signed up for Go Beyond Celiac will receive this via a monthly email). We’re hoping to gather even more cognitive-related data to fill in gaps on behavioral issues and brain fog associated with celiac disease. We’ll also be presenting important findings from our surveys at conferences across the country. Be sure to register so you don’t miss out on sharing your story and receiving Insights and clinical trial opportunities!
This month, we’re also filming a public service announcement with volunteers from our community to raise awareness about the seriousness and burden of this disease. This ad featuring people who are directly and personally affected by celiac disease will reach millions of viewers across the country and beyond.
While our PSA will help increase awareness, our continued partnership with imaware™ at-home test kits will help increase diagnosis rates. With each testing kit sold, a portion of the sale goes toward expanding our programs for the community and research initiatives.
Additionally, this year we will be continuing to fund celiac disease science by giving out more research grants to scientists undertaking the most promising research. Because celiac disease research is underfunded, we have crafted a plan centered around funding grants. As we support the ideas that offer the greatest promise, we will actively monitor and adjust our strategy as we go. We will also continue to advocate for increased NIH funding, as we did in 2019.
Speaking of advocacy, we will be lobbying for Gluten in Medicine Disclosure Act in both the House and Senate, along with any other important pieces of legislation that relate to the celiac disease, autoimmune and gluten-free communities that may come up. We encourage you to contact your representatives and share with them why these bills passing is so vital to our community.
We’re also very excited to announce that we will be expanding our Step Beyond Celiac 5K series to five cities, including our already established Kansas City, Philadelphia and Dallas races, as well as our Virtual 5K! Stay tuned for the big reveal of our two new sites! Our Step Beyond Celiac 5Ks have been a great success—they bring friends and families together, spread awareness of celiac disease and they raise important funds for celiac disease research. We hope to see you at one of our races this year.
Here’s to a successful 2020 and to being TOGETHER for a cure this year and BEYOND,