Mission: THE CELIAC DISEASE FOUNDATION DRIVES DIAGNOSIS, TREATMENT AND A CURE THROUGH RESEARCH, ADVOCACY AND EDUCATION.

Celiac Disease Foundation is a 501(c)(3) organization, with an IRS ruling year of 1995, and donations are tax-deductible.

Is this your nonprofit? Access the Nonprofit Portal to submit data and download your rating toolkit.


Contact Information

  www.celiac.org

 20350 VENTURA BLVD STE 240
Woodland Hls CA 91364-2469



...  ...  ...  ...  

Encompass Rating System by Charity Navigator


Overall Score

100

out of 100

This charity's score is a passing score.
This overall score is calculated entirely from a single beacon score: 100% Finance & Accountability


Learn about the Encompass Rating System: Overview | FAQ | Release Notes


This organization is potentially eligible for a Charity Navigator Star Rating. Vote Now to request to have our analyst team rate Celiac Disease Foundation for a Star Rating. The organization currently has 39 votes.

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...   Finance & Accountability


This score provides an assessment of a nonprofit's financial health (stability, efficiency and sustainability) and its commitment to governance practices and policies.


Finance & Accountability Score

100

out of 100

The score earned by Celiac Disease Foundation is a passing score

This V4 of the Finance & Accountability Score provides a baseline measure of an organization’s health including the indicators listed in the report below.

This score represents Form 990 data from 2019, the latest year published by the IRS.



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Finance & Accountability Report

100

of 100 points

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Program Expense

Program Expense Ratio

88.89%

Higher effect on score

More data  


The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s). This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver.


Program Expense Percentage

Amount of Credit Received

70% or higherFull Credit
60% - 69.9%Partial Credit
Below 50%Zero Points for Both Program Expense percentage AND Liabilities to Assets

Source: IRS Form 990

Board Composition

15/15 Independent

Higher effect on score


Charity Navigator looks for at least 3 board members, with more than 50% of those members identified as independent (not salaried).


The presence of an independent governing body is strongly recommended by many industry professionals to allow for full deliberation and diversity of thinking on governance and other organizational matters.


Source: IRS Form 990

Independent Audit or Financial Review

Audited

Higher effect on score


An Audit, Review, or Compilation provides important information about financial accountability and accuracy. Organizations are scored based on their Total Revenue Amount:

Total Revenue Amount

Expectation to Receive Credit

$1 million or higherExpected to complete an audit
$250,000 - $1 millionExpected to complete an audit, review, or compilation
Less than $250,000No expectation (removed from scoring methodology)

Source: IRS Form 990

Liabilities to Assets Ratio

11.93%

Lower effect on score


The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990). This ratio is an indicator of an organization’s solvency and/or long-term sustainability.

Liabilities to Assets Ratio

Amount of Credit Received

Less than 50%Full Credit
50% - 59.9%Partial Credit
60% or moreNo Credit

Source: IRS Form 990

Website

Listed

Lower effect on score


Charity Navigator looks for a website on the Form 990 as an accountability and transparency metric.


Nonprofits act in the public trust and reporting publicly on activities is an important component.


Source: IRS Form 990

Conflict of Interest Policy

Listed

Lower effect on score


Charity Navigator looks for the existence of a conflict of interest policy on the Form 990 as an accountability and transparency measure.


This policy protects the organization and by extension those it serves, when it is considering entering into a transaction that may benefit the private interest of an officer, director and/or key employee of the organization.


Source: IRS Form 990

Board Meeting Minutes

Documented

Lower effect on score


Charity Navigator looks to confirm on the Form 990 that the organization has this process in place as an accountability and transparency measure.


An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference.


Source: IRS Form 990

Document Retention and Destruction

Listed

Lower effect on score


Charity Navigator looks for the existence of a document retention and destruction policy per the Form 990 as an accountability and transparency measure.


This policy establishes guidelines for the handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promote data integrity.


Source: IRS Form 990

Whistleblower Policy

Listed

Lower effect on score


Charity Navigator looks for the existence of a whistleblower policy per the Form 990 as an accountability and transparency measure.


This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report financial or other types of mismanagement.


Source: IRS Form 990

Additional Information

Unscored

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Total Revenue and Expenses

Total Revenue and Expenses

This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.

Salary of Key Persons

Presented here are up to five of this organization's highest compensated employees. This compensation data includes salary, cash bonuses, and expense accounts and is displayed exactly how it is reported to the IRS. The amounts include salary, cash bonuses, and expense accounts. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. Read the IRS policies for compensation reporting



MARILYN GRUNZWEIG GELLER, CEO

$188,662


BRAD HERRAMA, BOARD MEMBER, SECRETARY

$0


CHAD HINES, BOARD MEMBER, VICE CHAIR

$0


JOHN WAGNER, BOARD MEMBER, TREASURER

$0


JIM WATSON, BOARD MEMBER, CHAIR

$0


Source: IRS Form 990 (page 7), filing year 2019

Business Master File Data

Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website


Activities:

Scientific research (diseases) (BMF activity code: 161)

Other health services (BMF activity code: 179)


Foundation Status:

Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi) (BMF foundation code: 15)


Affiliation:

Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)

Data Sources: IRS Forms 990

The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to view this organization's Forms 990 on the IRS website (if any are available).

Pandemic Response

Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them. Charities may submit their own pandemic responses through their nonprofit portal.


Celiac Disease Foundation reported being impacted by COVID-19 in the following ways:
  • Program Delivery

  • Fundraising Capacity

  • Grants Sent


How COVID-19 impacted the organization's operations financially:

2020 mid-year donations declined so the Celiac Disease Foundation was able to receive PPP loan funding which allowed fort the full staff to remain employed.


How COVID-19 impacted the organization's delivery of programs:

The Foundation shifted to a fully virtual operation, providing support and programming online. Staff developed a COVID resource center at https://celiac.org/coronavirus-information/ that has had more than 200,000 visitors to date. We were able to deliver a full-day virtual Patient Education & Advocacy Summit to more than 1700 registrants with thousands more viewing the recorded presentations at https://celiac.org/what-you-need-to-know-video-series/. We developed an online advocacy training program at iadvocate.celiac.org and a school training program at school.celiac.org. We expanded our patient recruitment services at iqualify.celiac.org, including implementation of an in-house call center to speed recruitment. We also presented virtually to Congress and NIH to assure research funding for celiac disease, and presented our patient advocates to the FDA to amplify the patient voice in therapeutics development.


How this organization adapted to changing conditions caused by COVID-19:

In shifting to a fully virtual operation we modifed our policies and procedures to accomodate remote work. In addition to the development of multiple online programs and trainings, we moved our annual peer-to-peer fundraising event, the CDF Turkey Trot, to a hybrid event where participants used an app to track their steps which replicated moving from New York to California, unlocking gluten-free coupons along the way. Participants walked or ran with their covid pods, alone, or with their pets, or counted their steps through yoga, dance, gardening, housecleaning, among other forms of movement. We had participants from around the world and most of the 50 states!


Innovations the organization intends to continue permanently after the pandemic:

The programs mentioned above will continue to be supported online. This year's Turkey Trot will continue with a strong virtual presence, as well as a live event in New York, COVID permitting, to allow our celiac community to engage with one another. We will also continue with a virtual Patient Education & Advocacy Summit as this allowed so many more to participate and have their questions answered.


...   Impact & Results


This score estimates the actual impact a nonprofit has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.


Impact & Results Score

Not Currently Scored

Celiac Disease Foundation cannot currently be evaluated by our Encompass Rating Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.

Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.

Learn more about Impact & Results.

Do you work at Celiac Disease Foundation? Join the waitlist for an updated Impact & Results score.


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Additional Information

Unscored

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Largest Programs

Largest Programs



Celiac Disease Foundation reported its largest program on its FY 2019 Form 990 as:


$1,310,720

Spent in most recent FY

100%

Percent of program expenses


RESEARCHTHE CELIAC DISEASE FOUNDATION STRATEGICALLY COLLABORATES WITH RESEARCHERS AND PHYSICIAN-BASED ORGANIZATIONS TO ADVANCE UNDERSTANDING OF AND TREATMENTS FOR CELIAC DISEASE. THE FOUNDATION SUPPOR ... (More)


...   Leadership & Adaptability


This score provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.


Leadership & Adaptability Score

100

out of 100

The score earned by Celiac Disease Foundation is a passing score.

Encompass Rating V4 provides an evaluation of the organization's Leadership & Adaptability through the nonprofit organization submitting a survey response directly to Charity Navigator.


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Leadership & Adaptability Report

100

of 100 points

Mission

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s mission


Celiac disease is one of the world’s most prevalent genetic autoimmune diseases, affecting an estimated 3 million Americans, 70-80% of whom are undiagnosed. Causing the body to attack its own small intestine, it can lead to many other devastating health conditions, including cancer. Unfortunately for the millions who suffer, celiac disease has largely been ignored by our federal government which provides little to no funding for research nor for public awareness of its serious consequences. Through strategic investments in research, education, and advocacy, the Celiac Disease Foundation seeks to remedy this by accelerating treatments and a cure.


Source: Nonprofit submitted responses

Vision

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.


Since its founding in 1990, the Celiac Disease Foundation has funded and executed international initiatives in three principal areas to bring an end to the suffering caused by celiac disease: medical research, patient and healthcare provider education, and public policy advocacy. Our vision is a highly optimistic but credible shared dream of what is possible: By 2025, all Americans with celiac disease will be diagnosed and treated.


Source: Nonprofit submitted responses

Strategic Goals

The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.


Goal One: Achieve rapid diagnosis and treatment of celiac disease by supporting research initiatives, studies and clinical trials, and educational programming and resources for healthcare providers.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Goal Two: Achieve rapid diagnosis and treatment of celiac disease through expanded patient education and support programs and tools.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Goal Three: Advocate to influence private and public sector policies to improve the quality of life for all people affected by celiac disease.

Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.


Source: Nonprofit submitted responses

Leadership Development

The nonprofit provides evidence of investment in leadership development


Describe an investment in leadership

Celiac Disease Foundation staff enrolled in the Michigan State University Extension Certificate of Excellent in Nonprofit Leadership and Management program, an 8 course online program that includes courses in: • Strategic Planning • Resource Development • Board Governance • Marketing • Mission Based Management • Social Entrepreneurship • Volunteer Management • Strategic Alliances Staff are also encouraged to identify and attend training courses and meetings beneficial to growing in their role, and are required to set annual growth and development goals as part of their performance review, including listing what supports are needed to achieve their goals. Examples of this include serving on advisory panels and committees of national coalition groups.

Source: Nonprofit submitted responses

Mobilizing for Mission

The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.


This organization mobilizes for mission in the following ways:
  • Strategic Partnerships

  • Networks of Collective Impact Efforts

  • Thought Leadership

  • Raising Awareness

  • Community Building

  • Policy Advocacy

What are this organization’s external mobilizaton efforts?

The Celiac Disease Foundation engages in strategic partnerships with patient advocacy groups, medical societies, biopharmaceutical companies, and retail manufacturers As the North American affiliate to the AOECS, the Foundation promotes global collaboration for drug development and labeling of gluten-free foods and medicines. Through its partnership with NAPSGHAN, the Foundation developed and hosts the online Clinical Guidelines for Pediatric Celiac Disease decision tool, used by thousands of clinicians annually. Other partnerships include serving on the PCORI Patient Engagement Advisory Panel, NHC, NCAPG, and DDNC. The Foundation regularly presents at meetings and publishes peer-reviewed research from its iCureCeliac patient registry. Through its State Advocacy Ambassador, School Guidelines for Celiac Disease Management , Team Gluten-Free, and Student Ambassador and expansive social media programs, the Foundation engages in robust advocacy, community building, training and organizing.

Source: Nonprofit submitted responses

Story of Adaptability

The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.


The Celiac Disease Foundation adapted to external changes by shifting to a fully virtual operation, providing support and programming online. Staff developed a COVID resource center at https://celiac.org/coronavirus-information/ with more than 200,000 visitors to date. The Foundation was able to deliver a full-day virtual Patient Education & Advocacy Summit to more than 1700 registrants with thousands more viewing the recorded presentations at https://celiac.org/what-you-need-to-know-video-series/. In response to the need for virtual advocacy training, the Foundation developed an online State Advocacy Ambassador program at iadvocate.celiac.org, preparing advocates to work with their Congressional representatives’ home offices. The Foundation also developed a video-based training program with companion guide to assist schools in meeting federally mandated accommodations for children with celiac disease, found at school.celiac.org. Patient recruitment services at iqualify.celiac.org were expanded, including implementation of an in-house call center to speed recruitment. The Foundation also presented virtually to Congress and NIH to assure research funding for celiac disease and presented it patient advocates to the FDA to amplify the patient voice in therapeutics development. In shifting to a fully virtual operation, the Foundation modified its policies and procedures to accommodate remote work. In addition to the development of multiple online programs and trainings, the annual peer-to-peer fundraising event, the CDF Turkey Trot, was shifted to a hybrid event where participants used an app to track their steps which replicated moving from New York to California, unlocking gluten-free coupons along the way. Participants walked or ran with their covid pods, alone, or with their pets, or counted their steps through yoga, dance, gardening, housecleaning, among other forms of movement. More than 2,000 participants engaged from around the world and most of the 50 states.

Source: Nonprofit submitted responses

...   Culture & Community


This score provides an assessment of the organization's engagement with the constituents it serves, a practice we term Constituent Feedback. When organizations listen to constituents, they are able to better deliver on programs and meet the needs of stakeholders. A future version of this Beacon will also assess an organization's people operations and its Diversity, Equity and Inclusion (DEI) metrics.


Culture & Community Score

Not Currently Scored

Celiac Disease Foundation is currently not eligible for a Culture & Community score because we have not received its Constituent Feedback data. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile. This data will provide the basis for the initial evaluation of Culture & Community.

Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.


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Culture & Community Report

Unscored

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Constituent Feedback

Constituent Feedback

Not Scored


This organization reported that it is collecting feedback.


Here's how this organization is listening and learning from the people they serve:


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

Electronic surveys (by email, tablet, etc.), Community meetings or town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email


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

To identify and remedy poor client service experiences, 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


With whom does your organization share the feedback you got from the people you serve?

The people we serve, Our staff, Our board, Our funders, Our community partners


What challenges does your organization face in collecting feedback from the people you serve?

We don't have any major challenges to collecting feedback


Briefly describe a recent change that your organization made in response to feedback from the people you serve.

In 2020, the Celiac Disease Foundation moved its annual Patient Education & Advocacy Summit to a virtual platform due to the pandemic. With more than 1,700 registrants from around the globe and thousands more viewing the recorded presentations, the Foundation was able to educate and connect with those who did not have the resources to travel to a terrestial meeting. Participants overwhelming requested in the post-Summit evaluation survey that the Foundation continue with a digital option for future Summits. Because of this feedback, the 2021 Patient Education & Advocacy Summit will be virtually presented.



Methodology


Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective. We've partnered with GuideStar by Candid to survey organizations about their feedback practices. Nonprofit organizations can fill out the How We Listen section of their Candid profile to receive a rating.


Charity Navigator awards full credit for this Beacon to every nonprofit that is eligible for an Encompass Rating that completes the survey, in recognition of their willingness to publicly share this information with the nonprofit and philanthropic communities. This data is not evaluated for quality at this time. Validation will be added in future iterations of this Beacon.

Analysis and Research


Like the overall Encompass Rating System, the Culture & Community Beacon is designed to evolve as metrics are developed and ready for integration. Our partnership with Feedback Labs and Guidestar by Candid, and other partners including Fund for Shared Insight, GlobalGiving, and Keystone Accountability, enables us to launch the first version of this beacon with Constituent Feedback information collected on Candid's site.


Feedback practices have been shown to support better Diversity, Equity, and Inclusion outcomes, an essential area of assessment that we intend to further expand and develop in the future. Feedback Labs has documented several studies which indicate that beyond achieving organizational goals, nonprofits that are attentive and responsive to concerns and ideas raised by beneficiaries establish stronger relationships with the people they serve, promote greater equity, and empower constituents in ways that can help to ensure better long-term outcomes. You can find resources to help nonprofits improve their feedback practices here.

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