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CELIAC DISEASE FOUNDATION Organization Name provided in the GuideStar Exchange* as of 11/04/2013: CELIAC DISEASE FOUNDATION

Organization Name as listed in the IRS Business Master File as of 07/14/2014: CELIAC DISEASE FOUNDATION

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

AKA  CDF
Woodland Hills, CA
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GuideStar Summary

&1002;                GuideStar Exchange Committed to transparency ?
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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2012, 2011, and 2010 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit and Charting Impact Report are available
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Basic Organization Information

CELIAC DISEASE FOUNDATION Organization Name provided in the GuideStar Exchange* as of 11/04/2013: CELIAC DISEASE FOUNDATION

Organization Name as listed in the IRS Business Master File as of 07/14/2014: CELIAC DISEASE FOUNDATION

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Also Known As: CDF
Physical Address: Woodland Hills, CA 91634 
EIN: 95-4310830
Web URL: www.celiac.org 
Blog URL: youngandglutenfree.com 
NTEE Category: G Disease, Disorders, Medical Disciplines
G01 Alliance/Advocacy Organizations
G Disease, Disorders, Medical Disciplines
G70 Digestive Diseases, Disorders
H Medical Research
H70 Digestive Diseases/Disorders Research
Year Founded: 1990 
Ruling Year: 1995 


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Mission Statement

Celiac Disease Foundation is a nonprofit public benefit corporation dedicated to providing services and support regarding Celiac Disease and Dermatitis Herpetiformis, through programs of awareness, education, advocacy and support of research.

Legitimacy Information

This organization is registered with the IRS.

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

Institutional funders should note that an organization’s inclusion on GuideStar.org does not satisfy IRS Rev. Proc. 2011-33 for identifying supporting organizations.

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Annual Revenue & Expenses (GuideStar Exchange,
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November 2013)

Fiscal Year Starting: January 1, 2012
Fiscal Year Ending: December 31, 2012

Total Revenue $1,048,184
Total Expenses $674,777

Revenue & Expenses (GuideStar Exchange,
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November 2013)

Fiscal Year Starting: January 1, 2012
Fiscal Year Ending: December 31, 2012

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
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Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership (GuideStar Exchange,
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November 2013)

Ms. Marilyn G. Geller

Profile:

Marilyn joined Celiac Disease Foundation, the nation’s leading voluntary health organization for celiac disease and non-celiac gluten sensitivity education and awareness, as Chief Operating Officer in March 2012 and was elevated shortly thereafter to Chief Executive Officer. As a previous treasurer of the CDF Board of Directors, Marilyn brings more than 20 years of management experience in healthcare and IT operations. A former Los Angeles County and UCLA hospital administrator and RAND Corporation researcher, she most recently served as Vice President of Product Management and Regulatory Compliance Officer for Medversant Technologies. Marilyn’s nonprofit experience includes board positions with the Olive View-UCLA Foundation, UCLA Health Services Alumni Association and Alpha Chi Omega. Becoming CDF’s Chief Executive Officer marks a return to her roots in public health advocacy. Selected as a Los Angeles County Department of Health Services Fellow, Marilyn received her MSPH degree from the UCLA School of Public Health and her undergraduate degree from UCLA. The mother of a son with celiac disease, undiagnosed until the age of 15 despite lifelong symptoms, Marilyn is a determined advocate for celiac disease and gluten sensitivity education and awareness.

Board Chair (GuideStar Exchange,
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November 2013)

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Board Co-Chair

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Board of Directors (GuideStar Exchange,
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November 2013)

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Board Leadership Practices (GuideStar Exchange,
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November 2013)
?

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

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?
Response Not Provided
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Response Not Provided
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Response Not Provided
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Response Not Provided
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

Highest Paid Employee data is not available for this organization.

People information was last updated by the nonprofit in November 2013

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Programs

Program: National Education Program (GuideStar Exchange,
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November 2013)

Budget:
--
Category:
None
Population Served:
General Public/Unspecified
Youth/Adolescents only (14 - 19 years)
Adults

Program Description:

Celiac Disease Foundation distributes the most current and accurate information from our Medical Advisory Board, with emphasis on its specific implications to consumers, patients, friends and family of patients, medical providers, and professionals in the gluten-freefood and service industry. This National Education program exists to increase the rate of diagnosis and improve the quality of life for those impacted by celiac disease and non-celiac gluten sensitivity. National Education Program components include the “Guidelines for a Gluten-Free Lifestyle” booklet, “Quick Start Gluten-Free Diet Guide” brochure, Education Conferences nationally and regionally, and sponsorship of Grand Rounds for medical experts to educate other medical professionals.

Program Long-Term Success:

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Program Success Monitored by:

Program Success Examples:

Program: National Support Program (GuideStar Exchange,
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November 2013)

Budget:
--
Category:
Diseases, Disorders & Medical Disciplines
Population Served:

Program Description:

Celiac Disease Foundation Support program includes 12 regional Chapters and 150 local Connections support groups across the United States. Through these platforms CDF promotes the distributionof information to those affected by celiac disease and non-celiac glutensensitivity, and provides a community of individuals who share commonexperiences and support each other through the lifestyle changes involved in living the gluten-free lifestyle. CDF Camp Gluten-Free is an additional support program hosted by CDF annually in Southern California, which provides a week-long sleep-away camp for celiac and gluten-sensitive children ages 7-17 in a completely gluten-free environment. Through support programs CDF aims toimprove the quality of life and success rate of adherence to the gluten-free lifestyle, the required treatment for celiac disease and non-celiac gluten sensitivity.

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Program Success Monitored by:

Program Success Examples:

Program: National Advocay and Awareness Programs (GuideStar Exchange,
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November 2013)

Budget:
--
Category:
Diseases, Disorders & Medical Disciplines
Population Served:

Program Description:

Celiac Disease Foundation Awareness and Advocacy program includes the campaigns: “Are You the One”, “Is Your Child the One”, “Is Your Patient the One”, and “The #1 Disease You’ve Never Heard of”Public Service Announcement. National and Regional Gluten-Free EXPOs bring consumers of gluten-free products to their providers, thereby increasing producers’ understanding of the needs of their consumer base. As a founding member of both the American Celiac Disease Alliance and the Gluten-Related Disorders Collaborative, Celiac Disease Foundation advocates for the needs of the gluten-free community in the public sphere.

Program Long-Term Success:

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Program: National Research Program (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
November 2013)

Budget:
--
Category:
Diseases, Disorders & Medical Disciplines
Population Served:

Program Description:

Celiac Disease Foundation promotes research in the medical and scientific community to advance understanding of and treatments for celiac disease and non-celiac gluten sensitivity. The Foundation supports and publicizes the research activities of the member of its Medical Advisory Board, including sponsoring speaking events. Grantmaking activities include funding a study to determine the impact of screening for symptomatic patients in a low-income income population, jointly sponsored with UCLA Medical Center and the Los Angeles County Department of Health Services. The CDF database and audience is a resource for researchers to gather data in celiac and non-celiac populations.

Program Long-Term Success:

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Program Success Monitored by:

Program Success Examples:

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Impact Summary from the Nonprofit Additional Information
A Charting Impact Report consists of an organization’s responses to the five questions. Helping validate this self-reported data are three reviews. Once an organization has used the online interface to complete its report, its responses will produce a document with a unique URL that will be shared on this website, on your GuideStar profile, on the reports of charities participating in BBB Wise Giving Alliance evaluations, and – in the future – with other websites and information sources about nonprofits. We encourage organizations to use this URL to share their report on their own website and through their own media channels. Participants will receive guidance about promoting their Charting Impact Report, along with other benefits, once they publish their report.

Only 1 in 6 of the 3 million Americans estimated to have celiac disease are diagnosed. Nearly 2.5 million Americans are unaware of the cause of their suffering. Since its inception in 1990, Celiac Disease Foundation has been at the forefront of celiac disease education, awareness, advocacy, and support services. Today, guided by its distinguished Medical Advisory Board, and supported by Chapters and Connections throughout the United States, CDF is meeting the growing public health challenge of increased diagnosis of celiac disease and non-celiac gluten sensitivity. With a range of vital programs and services for the public, patients, healthcare professionals and the food industries, and the support of generous donors, members, and corporate sponsors, CDF programs increase the rate of diagnosis and improve the quality of life for those affected by celiac disease and non-celiac gluten sensitivity. CDF is a founding member of the American Celiac Disease Alliance (ACDA) and is actively involved with the National Institutes of Health (NIH), NIH Celiac Disease Awareness Program, National Digestive Diseases Information Clearinghouse (NDDIC) and the Food & Drug Administration (FDA), in the promotion of celiac disease and non-celiac gluten sensitivity concerns. CDF is a recognized member of Independent Charities of America (ICA), a nonprofit association of America's best charities, and Health & Medical Research Charities of America (HMR), a nonprofit organization that pre-screens high quality national and international charities. CDF's awareness campaigns include "Are You the ONE?," "Is Your Child the ONE?" and "Is Your Patient the ONE?"
For more in-depth information about this organization's impact, view their Charting Impact Report.
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