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Note from Alice: Uncovering Diversity & Disparity in Celiac Disease
Have you ever worked on a project for a very long time and the fruits of your labor come to fruition? Well, I am thrilled to share the fruits of our labor with you that Beyond Celiac is the exclusive celiac disease community partner joining with the National Minority Quality Forum (NMQF), a research and educational organization dedicated to ensuring that high-risk racial and ethnic populations and communities receive optimal health care. Together we will examine and address health inequities in the diagnosis and treatment of celiac disease.
In addition to increasing awareness of the prevalence of celiac disease in the U.S. across various demographic groups, our two organizations will investigate the extent of undiagnosed celiac disease, particularly among non-Caucasians, and we will use extensive research of underserved populations to inform development of interventions focused on the needs of all patients, including Black, Hispanic, Asian and underserved populations. This will help us identify those who are slipping through the cracks of diagnosis, who don’t have access to gluten-free foods and who are not being represented in clinical trials for new treatments. If you have any suggestions on the subject, we would love to hear from you.
You see, the NMQF comprehensive database is vast, comprising more than 5 billion patient records, which it uses to define disease prevalence, costs and outcomes for demographic subpopulations at the ZIP code level. The resulting visual maps, paired with the combined science and advocacy of Beyond Celiac, will provide a unique resource to increase awareness, improve clinical practice, expand research and ultimately improve health outcomes among underserved populations with celiac disease.
This work is vital to ensuring that we are working toward a world in which all Americans with celiac disease can live healthy lives, free from social stigma and fear of gluten exposure.
To help facilitate projects like this that make life better for the entire celiac disease community and bring us closer to treatments and a cure, please consider giving today at support.www.beyondceliac.org/stillhere. Between now and December 15th, all gifts will be matched dollar for dollar, but to $20,000, so your gift will go twice as far!
What a Year! We’re Still Here!
Give today to our End-of-Year Campaign to accelerate research for treatments and a cure for celiac disease. All gifts given through December 15 will be matched 1:1 if we meet our $20,000 goal.
2020 has been a challenging year. Yet, due to the transformative support of donors like YOU, we are able to continue our mission with urgency and determination.
As noted above, we have partnered with National Minority Quality Forum (NMQF) to address healthcare disparities in celiac disease. This research and educational organization is dedicated to ensuring that high-risk racial and ethnic populations and communities receive optimal health care.
In addition to increasing awareness of the prevalence of celiac disease in the U.S., together, we will investigate the extent that celiac disease is underdiagnosed, particularly among non-Caucasian patients. We will use extensive research to support the development of interventions focused on the needs of all patients, including Black, Hispanic and underserved populations.
To help facilitate projects like this that make life better for the entire celiac disease community and bring us closer to treatments and a cure, please consider giving today.
Gluten-Free Cooking with Oonagh
It’s that time of year! An easy Autumnal recipe for those chilly days and nights.
Snickerdoodle, Ginger or Chocolate Chip Crisps
A delicious treat to serve this holiday season. Who doesn’t love freshly baked snickerdoodle cookies?
About Chef Oonagh Williams
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 teaches cooking classes, hosts dinner parties, and offers one-on-one help. Buy her Delicious Gluten-Free Cooking e-book and connect with her on Facebook.
Thank You For Making our Gala a Success!
Friday, October 23 was such an amazing night! Thank you for your help in making our Virtual Evening Beyond Celiac a great success for our entire community! You can still donate to support our important work to accelerate treatments and a cure for celiac disease!
Thanks to our community for making the VIRTUAL Step Beyond Celiac 5Ks a success in 2020!
We started 2020 ready for growth and set some big goals to take our Step Beyond Celiac 5Ks to 5 cities across the country. Boston, Philadelphia, Kansas City, Dallas, and Denver!
2020 has been unpredictable and the pandemic forced us to be quick on our feet, to change our thinking and our races. We are so grateful to our community for sticking by us while we pivoted our races to virtual.
As we cross the finish line of our 2020 Virtual Tour we are excited to celebrate so many memories & accomplishments, all thanks to our amazing community.
Together we:
- Hosted over 1,100 virtual SBC5K participants from all 50 states and 11 different countries
- Raised nearly $80,000 for celiac disease research – through sponsorships, team, and individual contributions.
- Brought together our community of supporters virtually sharing stories, photos, what moves them via #SBCwithme
None of this would be possible without the support of people like you! So from the bottom of our gluten-free hearts, we thank you! See you next year!
Don’t forget to follow us on Instagram @stepbeyondceliac5K and check out our Facebook page.
Visit The Step Beyond Celiac Site
Research News
Celiac disease scientists discuss discoveries they are making with help from Beyond Celiac grants
Researchers update studies of killer cells, celiac disease screening and a more precise way to measure intestinal damage.
Beyond Celiac joins forces with National Minority Quality Forum
This unique partnership aims to shine a spotlight on disparity in the diagnosis of celiac disease.
New celiac disease drug candidate, KAN-101, in Phase 1 clinical trials
New potential treatment for celiac disease aims to re-educate the immune system so it does not react to gluten.
Celiac disease patients not at increased risk of getting COVID-19
A survey of more than 10,000 celiac disease patients around the world found the risk of getting COVID-19 was not increased compared to the general population.
Phase 2 study relaunching in November
Celiac disease study postponed due to COVID-19 is relaunching in November.
Clinical Trials
New Phase 2 Clinical Trial for Ongoing Celiac Symptoms
Are you still experiencing celiac disease symptoms despite your best efforts to follow a gluten-free diet?
The PROACTIVE Celiac Study is looking for people between the ages of 18 and 70, who have biopsy-confirmed celiac disease and have been on a gluten-free diet for at least the last 12 months. You will not be asked to ingest gluten in this study. The goal of this phase 2 clinical trial is to test the safety and effects of the investigational medication PRV-015. In combination with a gluten-free diet, PRV-015 aims to reduce symptoms and intestinal inflammation caused by accidental gluten exposure.
Learn More
See if You Qualify
Use referral code: REFBC
Beyond Celiac Chosen as Exclusive Patient Organization to Recruit for First-Ever Phase 3 Clinical Trial
Beyond Celiac has been chosen by 9 Meters Biopharma, Inc. (Nasdaq: NMTR) as the exclusive patient organization to recruit for the first-ever Phase 3-stage clinical trial therapeutic for treatment of celiac disease.
Allergic Living Spotlight
Allergy-Friendly, Bread-Free Lunch Ideas Kids Will Love
Back-to-school season means the return to packing school lunches. For families who have children with food allergies, taking time to prepare a meal is essential to keeping your kids well-fed and safe.
News, Events & Updates
WATCH: Research Grant Awardee Interview with Doctor Marisa Gallant Stahl
As the recipient of the Beyond Celiac/SSCD Young Investigator grant, she is working on the Autoimmunity for Kids (ASK) study, a free health screening program open to all Colorado children, from one to 17-years-old, designed to detect celiac disease and type 1 diabetes.
WATCH: Research Grant Awardee Interview with Doctor Jocelyn Silvester
Jocelyn Silvester, MD, director of research of the Celiac Disease Program at Boston Children’s Hospital, is the recipient of the Beyond Celiac Pilot and Feasibility grant. Silvester is investigating the use of RNA sequencing as a more exact way to measure intestinal damage revealed in a biopsy.
WATCH: Research Grant Awardee Interview with Doctor Paul Klenerman
He has received the Beyond Celiac Established Investigator Award and is studying killer cells that cause the actual tissue damage in celiac disease. Dr. Klenerman is currently also playing a key role in the search for answers about COVID-19 as part of the COVID-19 Genomics UK Consortium.
Raise Money for Beyond Celiac on Facebook!
Happy birth-month to all our November-born community members! When your big day rolls around, consider “donating” it to Beyond Celiac so that we can help fund new research scientists in the celiac disease field. And a HUGE thank you to everyone who’s created fundraisers for us throughout the years!