Beyond Celiac

Awareness.Advocacy.Action.

aka NFCA   |   Ambler, PA   |  www.beyondceliac.org

Mission

Beyond Celiac unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure.

Notes from the nonprofit

Added Information: Research: Beyond Celiac partners with Janssen (Johnson & Johnson) to commit up to $1 million to accelerate celiac disease research. Beyond Celiac partners with National Minority Quality Forum to target inequalities in celiac disease diagnosis. Advocacy: Beyond Celiac supports and promotes legislation that will improve the lives of people with celiac disease and other autoimmune disorders. including the BENEFITS Act of 2021, the Gluten in Medications Disclosure Act of 2021, SAFE STEP ACT of 2021 and the RISE Act of 2021. Interns: Beyond Celiac Summer Intern Council across the country work to engage college students in the mission to cure celiac disease. Community: Beyond Celiac launched the first of a series of Virtual Town Hall meetings to connect the community with celiac disease experts.

Ruling year info

2003

President & CEO

Ms. Alice Bast

Main address

PO Box 544

Ambler, PA 19002 USA

Show more contact info

Formerly known as

National Foundation for Celiac Awareness

EIN

90-0108854

NTEE code info

Digestive Diseases, Disorders (G70)

Alliance/Advocacy Organizations (K01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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

Beyond Celiac is taking the lead to amplify the patient’s voice to ensure that our community is directly connected to the researchers developing new treatment options and, ultimately, a cure in the fight against celiac disease. NFCA will collect previously unknown data about the patient’s journey before, during and after diagnosis using two unique technologies: a Community Engagement Platform and, a Patient Registry.

Population(s) Served
Adults

The Seriously, Celiac Disease campaign is a special project that was developed by Beyond Celiac over the course of a year. Seriously, Celiac Disease is more than just a video. The video and discussion guides were born from a multi-phase research project with volunteer participants who are either living with celiac disease or a relative of someone living with the genetic autoimmune disease.

Population(s) Served
Adults

GREAT Kitchens and GREAT Schools, Colleges and Camps are online gluten-free training programs designed to teach foodservice establishments the ins and outs of safe gluten-free food preparation. The programs are quite similar; each contains 5 modules focuses on ensuring food stays gluten-free from the ingredient sourcing until the plate hits the table.

Population(s) Served
Adults

Step Beyond Celiac is a fun run/walk event for the entire family!

Currently held in three 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.

Population(s) Served
Adults

Where we work

Accreditations

Charity Navigator 4 Star OverallScore and Rating 2020

National Health Concil Standards of Excellence 2016

GuideStar Seal of Transparency 2019

Affiliations & memberships

Best in America Charities 2020

Health and Medical Research Charities of America 2020

Combined Federal Campaign 2020

Our results

SOURCE: Self-reported by organization

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

'Seriously, Celiac Disease'

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.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

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.

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.

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

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Beyond Celiac unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. Beyond Celiac serves the celiac disease and gluten sensitive community. These are people who have celiac disease, non-celiac gluten sensitivity (gluten sensitivity), their families and caretakers. In addition, we serve people who are concerned about having celiac disease or gluten sensivity and are seeking information about determining if they have celiac disease. Because the only treatment for celiac disease is the gluten-free diet, Beyond Celiac serves people who are associated with procuring, preparing and serving gluten-free food. This includes restaurants, chefs, schools and universities.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees,

  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    Beyond Celiac has developed and is conducting a series of virtual Town Hall meetings in direct response to a demonstrated interest from our community to hear from experts on specific topics related to celiac disease and asociated disorders.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board,

  • How has asking for feedback from the people you serve changed your relationship?

    The request for feedback from our community has been been very well received and brings the people we serve closer to our organization and the work that we are doing. Seeking feedback increases the trust that the people we serve have in our work and the information we share with them. Beyond Celiac relies on input from our community to ensure that we’re meeting their wants and needs when it comes to living with celiac disease. Because of this, Beyond Celiac created the Patient and Family Advisory Council, a group of passionate community members who are all affected by celiac disease in some way. We regularly look to this volunteer group. Their voice is at the center of everything we do at Beyond Celiac.

  • Which of the following feedback practices does your organization routinely carry out?

    We aim to collect feedback from as many people we serve as possible, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, 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,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

Beyond Celiac
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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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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Beyond Celiac

Board of directors
as of 7/30/2021
SOURCE: Self-reported by organization
Board co-chair

Dr. Alan Ehrlich

University of Massachusetts Medical School

Term: 2018 - 2024


Board co-chair

Mr. C. Kane Brenan

Tiff Investment Management

Term: 2018 - 2024

Alice Bast

Beyond Celiac

Robert Beall, PhD

Cystic Fibrosis Foundation

Gerald Bertiger, MD

Hillmont GI

C. Brenan

Goldman Sachs

R. Bennett Muskin

Sagebrook Partners, LLC

Barb Weir Powers

Powers Equipment Company

Jennifer Snyder

Dilworth Paxson, LLP

Lisa Agdern

N/A

Brittany Baker

FOMO Baking CO.

Todd Hammer

North Run Capital

Gregg Melinson

Hewlett Packard Enterprise

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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

SOURCE: Self-reported; last updated 07/30/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

Equity strategies

Last updated: 07/30/2021

GuideStar 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

Policies and processes
  • 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.