Beyond Celiac
Together for a Cure
Programs and results
What we aim to solve
Celiac disease is a serious genetic autoimmune disease. Celiac disease can affect men and women of all ages and races. An estimated 1 in 133 Americans, or about 1% of the population, has celiac disease. Screening studies point to a potentially higher prevalence than 1% in the United States. A estimated 5-22% of people with celiac disease have an immediate family member who also has celiac disease. A meta-analysis found the global incidence of celiac disease significantly increasing. It noted that a genuine increase in the incidence of celiac disease is occurring beyond diagnostic improvements, most likely due to environmental factors. It also found the pooled global prevalence of celiac disease was 1.4%. Celiac disease can lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases. The goal is to find a cure for celiac disease by 2030.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Accelerating Research & Forging Pathways to a Cure
We firmly believe that with a strategic approach to targeted research, an effective treatment or cure is possible by 2030. To accomplish that goal, we are laser-focused on addressing the many current barriers. Barriers to a cure:
Celiac disease is poorly understood by the medical community
There is limited support for early career scholars/researchers
The serious nature of the disease is underappreciated
Too many people remain undiagnosed
There is a lack of funding and strategic focus for research
There is an assumption that the gluten-free diet is enough
The Beyond Celiac Science Plan includes evidence generation that highlights the seriousness of the disease, translational research and funding the most promising science, accelerating clinical trials, and exploring opportunities for drug repurposing.
Raising Awareness and Driving Diagnosis
Through award-winning PSAs, PR campaigns, national polling with Harris Poll, rich engagment with the digital community on social media and through in person and online educational events, summits and symposiums, Beyond Celiac is elevating awareness about this serious genetic autoimmune disorder and encouranging testing before people begin the gluten-free diet.
Step Beyond Celiac 5Ks
Step Beyond Celiac is a fun run/walk event for the entire family!
Currently held in cities across the US, Step Beyond Celiac 5Ks raise funds to support the Beyond Celiac research efforts and help the organization develop a global patient registry of people diagnosed with celiac disease who want to participate in research studies, including clinical trials.
Expanding Health Equity
Beyond Celiac fosters a sense of belonging by elevating underrepresented voices as we work together for a cure. At the heart of this vision is a world in which all people have equal access to good health choices, healthcare, and health outcomes.
Through research and partnerships we focus on reducing disparities, both in diagnosis and access to resources. We advocate for access to healthcare and the right for everyone to live their healthiest life, especially communities that are disproportionately affected by systemic, longstanding inequities of any type. We recognize that only by working with and listening to people of all races, backgrounds, ethnicities, sexual and gender orientations, abilities, and cultural backgrounds can we truly understand and appreciate one another and fulfill our mission of a world Beyond Celiac.
Where we work
Affiliations & memberships
Best in America Charities 2020
Health and Medical Research Charities of America 2020
External reviews
Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of Facebook followers
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Related Program
Accelerating Research & Forging Pathways to a Cure
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Number of return website visitors
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Related Program
Accelerating Research & Forging Pathways to a Cure
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Context Notes
We had 2.1 million visitors to the website in 2020 and 12.5% were regular visitors. This was during the pandemic.
Number of unique website visitors
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Related Program
Accelerating Research & Forging Pathways to a Cure
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Number of participants reporting greater issue awareness
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Related Program
Raising Awareness and Driving Diagnosis
Type of Metric
Outcome - describing the effects on people or issues
Direction of Success
Increasing
Context Notes
The improvement in diagnosis from 97% undiagnosed up to 50% diagnosed clearly can be linked to an increase in awareness by physicians and the public about the signs and symptoms of celiac disease.
Number of list subscribers
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Type of Metric
Other - describing something else
Direction of Success
Increasing
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Reports and documents
Download strategic planLearn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Beyond Celiac envisons a world in which people with celiac disease can live healthy lives, free from social stigma and fear of gluten exposure – a world Beyond Celiac. Through our Science Plan and research grants in the field of celiac disease, Beyond Celiac supports work to advance treatment options toward a cure for celiac disease.
Beyond Celiac aims to increase awareness and diagnosis up to 83% of the population that remains undiagnosed with celiac disease and, once diagnosed, help to improve their quality of life. Beyond Celiac is inspiring hope, accelerating innovation and forging pathways to a cure by working with the top researchers in the field of celiac disease and forming collaborations to ensure that resources are leveraged and used to move the field forward.
The overarching goal is to forge a pathway to a cure by 2030.
What are the organization's key strategies for making this happen?
Beyond Celiac is focused on funding promising research that quickly translates from scientific investigation to clinical use, speeding the development of treatments for patients. We firmly believe that with a strategic approach to targeted research, an effective treatment or cure could be possible by 2030. We are collecting and analyzing comprehensive data on the burden of celiac disease and gluten sensitivity. With this information, we can increase awareness and make a compelling case for larger investments from government agencies, pharmaceutical companies, biotech and more.
Beyond Celiac has developed a robust Science Team led by our Chief Scientific Officer (CSO) who has develped and implemented a transformational patient-centered research agenda focused on accelerating solutions toward new pharmaceutical treatments and a cure for celiac disease. Our Scientific Advisory Board and Medical Advisory Council consisting of top key opinion leaders in the field of celiac disease support this work to best to move the field forward.
Beyond Celiac is the nation’s top recruiter for celiac disease clinical trials. We work with pharmaceutical companies to ensure trials are designed with patient perspectives in mind. Go Beyond Celiac is a registry created by people with celiac disease, for people with celiac disease to advance celiac disease research by sharing personal stories and experiences. We created Go Beyond Celiac to advance celiac disease research like never before.
What are the organization's capabilities for doing this?
Beyond Celiac secured the funds to hold the focus groups and create the PSA (that is currently a web-based campaign. We reach over 2.5 million individuals through our website and social media to spread the word through a web-based initiative.
Beyond Celiac hosts Research Summits and Research Symposia that bring together top thought leaders, patients, government and pharma to discuss the gaps in advancing the field of celiac disease and form updated action plans to achieve a cure for celiac disease by 2030.
We have created a reasonable budget to implement our next steps while building upon our current programs and making sure that we continue to increase the diagnosis rate and improve the quality of life for those living with celiac disease. Our goal is to protect our community from long term health consequences and re-brand celiac disease as a serious genetic autoimmune disorder.
What have they accomplished so far and what's next?
We have moved the bar on diagnosis from 97% undiagnosed up to 83% undiagnosed in the past 17 years. Beyond Celiac has made gluten-free food affordable and accessible across the country when over 17 years ago it was 4 times as expensive and needed to be ordered from Canada.
We have trained over 80 colleges and universities on how to prepare safe gluten-free meals for students. We have trained over 1,600 medical professionals, however there remains a general lack of knowledge in the medical field about celiac disease. The time to diagnosis is generally 6-10 years for an individual.
Beyond Celiac provides grants to help scientists collect the preliminary data needed to begin answering major questions around celiac disease that could lead to breakthroughs for larger-scale research or clinical trials.
We have funded significant celiac disease research through Established Investigator Grants and Early Career Investigator Awards, including new research concerning RNA sequencing funded by Beyond Celiac. We have partnered with organizations such as the University of Sheffield to research neuropathology of celiac disease and Janssen in a 2-year joint research grant program. We presented a brain fog study at an international celiac disease symposium and funded a grant to expand investigation of the neurological and neuropsychological manifestations of celiac disease and gluten-related disorders.
These grants will lead to more researchers dedicating their careers to studying celiac disease and to finding better treatments and a cure.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Beyond Celiac
Board of directorsas of 08/09/2023
Dr. Alan Ehrlich
University of Massachusetts Medical School
Term: 2018 - 2024
Mr. C. Kane Brenan
Tiff Investment Management
Term: 2018 - 2024
Alice Bast
Beyond Celiac
Gerald Bertiger, MD
Hillmont GI
C. Kane Brenan
Goldman Sachs
R. Bennett Muskin
Sagebrook Partners, LLC
Barb Weir Powers
Powers Equipment Company
Jennifer P. Snyder
Dilworth Paxson, LLP
Lisa R Agdern
N/A
Brittany Baker
FOMO Baking CO.
Todd Hammer
North Run Capital
Gregg Melinson
Hewlett Packard Enterprise
Jennifer B Brownstein
MortgageCountry LLC
Lawrence P Flynn
SharkNinja
Carole Haas Gravagno
Sarena Snider
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? No -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
Disability
No data
Equity strategies
Last updated: 08/07/2023GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We have community representation at the board level, either on the board itself or through a community advisory board.
- We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.