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CELIAC DISEASE FOUNDATION Organization Name provided in the GuideStar Exchange* as of 11/03/2014: CELIAC DISEASE FOUNDATION

Organization Name as listed in the IRS Business Master File as of 10/17/2014: CELIAC DISEASE FOUNDATION

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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 11/03/2014: CELIAC DISEASE FOUNDATION

Organization Name as listed in the IRS Business Master File as of 10/17/2014: 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 drives diagnosis and treatment of celiac disease through advocacy, education and advancing research to improve the quality of life for all people affected by gluten-related disorders. Celiac Disease Foundation (CDF) was established in 1990 by Elaine Monarch to support the celiac disease community by funding important advocacy, education and research initiatives. Today, under the guidance of a National Board of Directors and a distinguished Medical Advisory Board, the Foundation is globally recognized with a nationwide network of chapters and support groups and full-time staff in Los Angeles, California. From sponsoring the first serology workshop that led to today’s celiac disease blood test, supporting clinical research, advocating on Capitol Hill for gluten-free labeling laws, partnering with mainstream manufacturers in creating today’s gluten-free marketplace, to offering the number one website for celiac disease, CDF has played a crucial role in improving the lives of those with celiac disease and their loved ones. 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 other gluten-related disorder concerns.

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 2014)

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 2014)

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
IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar website is an ongoing process.

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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 2014)

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 Executive Vice President for Medversant Technologies. 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 2014)

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Board Co-Chair

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Board of Directors (GuideStar Exchange,
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Board Leadership Practices (GuideStar Exchange,
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November 2014)
?

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?
Yes
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?
Yes
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?
Yes
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?
Yes
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?
Yes

Organizational Demographics (GuideStar Exchange,
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)
?

This section is not a requirement for any of the Exchange participation levels– Bronze, Silver, or Gold. Instead, it is a supplemental questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations.

Values in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

Self-Identified Gender of Board & Staff ? and Volunteers

Board Members Staff Members full time Staff Members part time Senior Staff full time Volunteers
Female 50% 100% 100%
Male 50%
Transgender?/Unspecified non-conforming
Unknown/declined to state

Diversity Policy

Does the organization track retention of staff, board, and volunteers? Yes

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 2014

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Programs

Program: National Education Program (GuideStar Exchange,
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November 2014)

Budget:
--
Category:
Diseases & Disorders
Population Served:
General Public/Unspecified
None
None

Program Description:

Celiac Disease Foundation provides the public with innovative tools and technologies in the promotion of celiac disease education as approved by its internationally renowned Medical Advisory Board,with emphasis on specific implications to consumers, patients, caregivers, medical providers, and professionals in the gluten-free food 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 other gluten-related disorders. National Education Program components comprise CDF’s Online Education Toolkit which includes a symptoms checklist (celiac.org/symptoms) designed to facilitate communication between patients and their healthcare practitioners, a nationwide directory of practitioners (celiac.org/directory) specializing in celiac disease and other gluten-related disorders who can review checklist results to determine a patient care plan, a 7 Day Gluten-Free Meal Plan (celiac.org/mealplan) to help the newly diagnosed and their families ease the transition to a gluten-free diet, and an Ask-the-Dietitian program which includes resources, tools and webinar and blog advice on how to thrive gluten-free (celiac.org/askthedietitan). National and regional conferences, health fairs, speaking engagements, allied health continuing education programs, sponsorship of Grand Rounds for medical experts to educate other medical professionals, and Chapter and Support Group Facilitator Training Program to provide community leaders with the skills to educate the celiac and gluten sensitive population are additional components of the Program.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: National Support 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 2014)

Budget:
--
Category:
Diseases & Disorders
Population Served:
None
None
None

Program Description:

Celiac Disease Foundation's National Support Program provides a nationwide network of Chapters and Support Groups dedicated to providing resources to assist those with celiac disease and other gluten-related disorders, their caregivers and loved ones. People with celiac disease and other gluten-related disorders often feel alone with their disease and the everyday struggles that the disease brings to their lives. The philosophy of CDF Support Groups is to provide a warm and caring environment where people with celiac disease and other gluten-related disorders, their family members, caregivers, and loved ones can share their experiences, methods of coping, and insights into living with this chronic illness. Knowing that others share this journey offers comfort and reassurance. Under the guide of a Facilitator, CDF support groups encourage people to adhere to a strict gluten-free diet and provide a comfortable learning environment to help them develop the best coping strategies to reduce stress that often accompanies living with this chronic illness. CDF offers support groups for adults, teens, children and families. Support groups are mentored by CDF National and Regional Chapters.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: National Advocacy 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 2014)

Budget:
--
Category:
Diseases & Disorders
Population Served:
None
None
None

Program Description:

Celiac Disease Foundation advocacy priorities are focused to provide more information to those living with celiac disease so that they can confidently live a healthy gluten-free life, and to advance research to drive diagnosis and ultimately find a cure. The current public policy priorities include: The passing of HR 2003: Gluten in Medications Disclosure Act. Currently, some medications, both prescription and over the counter, include gluten in their formulas but are not required to disclose this information. The Gluten in Medications Disclosure Act would require that all medications that contain sources of gluten list that information on their label. This listing would aid consumers and physicians both in making safe, educated healthcare decisions. The modification of the FDA gluten-free labeling law to include enforcement of the 20 parts per million standard for food service establishments. In August 2013, the Food and Drug Administration passed a law that mandated that if a manufacturer chooses to put “gluten-free” on food packaging the item must comply with the new FDA definition of the term – less than 20 parts per million (ppm) of gluten. This ruling was a great victory to the gluten-free community that allows consumers to buy gluten-free products with confidence. The next step is to apply this same ruling and enforcement to food service establishments. This modification to the law would ensure that those with celiac disease and non-celiac gluten sensitivity could order from gluten-free menu items at restaurants in confidence. Recognition by the National Institutes of Health for federal research grants. Research is limited by the amount of funding provided. Federal research grants will give celiac disease researchers the funding they need to make great strides in advancing treatment, driving diagnosis, managing symptoms, and finding a cure for celiac disease. To encourage celiac disease advocates to become vocal nationally as well as in their communities, Celiac Disease Foundation (CDF) has created an online Advocacy Program (celiac.org/advocate). The Advocacy Program provides information, guidance, tools and resources to push for improvements in celiac disease promotion, early detection, treatment and research by raising awareness among government leaders, opinion makers, health policymakers and the general public. Integrated with the American Celiac Disease Alliance (ACDA) platform, it includes a Legislative Action Center for individuals to easily learn about federal and state legislative bills, follow their status, and search for and contact their elected officials.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

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 2014)

Budget:
--
Category:
Diseases & Disorders
Population Served:
None
None
None

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, publishes summaries of compelling scientific and clinical research studies in language the public can understand, partners with biopharmaceutical companies to develop therapies, promotes clinical trials, and serves as a conduit to the media for scientific commentary. Grantmaking activities include funding an ongoing 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, and support of the major celiac disease centers in the US. The CDF database and audience serve as resource for researchers to gather data in celiac and non-celiac populations.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

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Impact Summary from the Nonprofit Additional Information
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Celiac Disease Foundation (CDF) was established in 1990 by Elaine Monarch to support the celiac disease community by funding important advocacy, education and research initiatives. Today, under the guidance of a National Board of Directors and a distinguished Medical Advisory Board, the Foundation is globally recognized with a nationwide network of chapters and support groups and full-time staff in Los Angeles, California. From sponsoring the first serology workshop that led to today’s celiac disease blood test, supporting clinical research, advocating on Capitol Hill for gluten-free labeling laws, partnering with mainstream manufacturers in creating today’s gluten-free marketplace, to offering the number one website for celiac disease, CDF has played a crucial role in improving the lives of those with celiac disease and their loved ones. 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 other gluten-related disorder concerns.
For more in-depth information about this organization's impact, view their Charting Impact Report.
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