Celiac Disease Foundation is located in Woodland Hills, CA. The organization was established in 1995. As of 12/2023, Celiac Disease Foundation employed 14 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Celiac Disease Foundation is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2023, Celiac Disease Foundation generated $4.2m in total revenue. This organization has experienced exceptional growth, as over the past 9 years, it has increased revenue by an average of 17.4% each year . All expenses for the organization totaled $3.0m during the year ending 12/2023. While expenses have increased by 13.5% per year over the past 9 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
THE CELIAC DISEASE FOUNDATION DRIVES DIAGNOSIS, TREATMENT AND A CURE THROUGH RESEARCH, ADVOCACY AND EDUCATION.
Describe the Organization's Program Activity:
Part 3 - Line 4a
RESEARCHTHE CELIAC DISEASE FOUNDATION MAKES STRATEGIC INVESTMENTS IN CUTTING-EDGE BIOMEDICAL RESEARCH AND PATIENT ENGAGEMENT AND COLLABORATES WITH RESEARCHERS AND CLINICIANS TO ADVANCE UNDERSTANDING OF AND TREATMENTS FOR CELIAC DISEASE. FROM 2019-2023, THE FOUNDATION HAS FUNDED MORE THAN $1,000,000 IN INTERNATIONAL RESEARCH AWARDS AND MEDICAL CONFERENCE GRANTS TO ADVANCE KNOWLEDGE OF THE CAUSES, PROGRESSION, AND CONSEQUENCES OF CELIAC DISEASE. OUR ANNUAL GLOBAL PRIZES RECOGNIZE EXCEPTIONAL INVESTIGATORS AT ALL STAGES OF THEIR CAREER, FROM A LATER-CAREER PRIZE FOR EXCELLENCE TO YOUNG INVESTIGATOR AND STUDENT RESEARCH AWARDS. THE FOUNDATION HOSTS A RESEARCH WORKING GROUP AND RELIES ON KNOWLEDGE AND GUIDANCE FROM OUR INTERNATIONALLY RENOWNED MEDICAL ADVISORY BOARD. THE FOUNDATION ALSO FOCUSES ON IMPROVING PATIENT ENGAGEMENT IN THE RESEARCH PROCESS. WE CONTINUE TO EXPAND OUR PATIENT REGISTRY, ICURECELIAC, THAT PROVIDES RESEARCHERS WORLDWIDE WITH DATA TO ACCELERATE CELIAC DISEASE RESEARCH. THROUGH IQUALIFYCELIAC-THE LARGEST NORTH AMERICAN DATABASE OF HIGHLY MOTIVATED CELIAC DISEASE PATIENTS-AND IRECRUITCELIAC, WE OFFER PATIENT-DRIVEN CLINICAL TRIAL SCREENING PROGRAMS FOR CELIAC DISEASE, LOWERING THE COST OF PATIENT RECRUITMENT AND SPEEDING ELIGIBLE PATIENTS INTO TRIALS AND STUDIES. THE FOUNDATION ALSO PRODUCES ORIGINAL RESEARCH AND SHARES VIA POSTERS AND ABSTRACTS AT GLOBAL CONFERENCES.ADVOCACYFOR 33 YEARS, THE CELIAC DISEASE FOUNDATION AND OUR NATIONAL NETWORK OF ADVOCATES HAVE WORKED DILIGENTLY FOR FEDERAL RECOGNITION OF CELIAC DISEASE AS ONE OF THE WORLD'S MOST PREVALENT, AND LEAST DIAGNOSED, GENETIC AUTOIMMUNE DISEASES. IN 2021, NIH ISSUED ITS FIRST-EVER NOTICE OF SPECIAL INTEREST TO FUND CELIAC DISEASE RESEARCH. THIS MOMENTOUS STEP WAS THE RESULT OF A FOCUSED ADVOCACY EFFORT THAT BEGAN IN APRIL OF 2019, WHEN CEO MARILYN G. GELLER TESTIFIED BEFORE THE HOUSE APPROPRIATIONS SUBCOMMITTEE, WHICH HELPED SECURE FY2020 APPROPRIATIONS REPORT LANGUAGE DIRECTING THE NIH TO DEVOTE SUFFICIENT, FOCUSED RESEARCH TO THE STUDY OF CELIAC DISEASE FOR THE FIRST TIME EVER. EVERY NIH APPROPRIATIONS BILL SINCE FY2020 HAS INCLUDED LANGUAGE SPECIFIC TO CELIAC DISEASE. THROUGH OUR ROBUST, NATIONAL POLICY ADVOCATE TRAINING PROGRAM, THE FOUNDATION RECRUITS AND TRAINS A NETWORK OF PATIENT ADVOCATES TO ENGAGE AS CIVIC PARTNERS IN THE RESEARCH PROCESS AND TO SPEAK TO MEMBERS OF CONGRESS ON BEHALF OF THE MORE THAN THREE MILLION AMERICANS SUFFERING FROM CELIAC DISEASE. THE CONGRESSIONAL CELIAC DISEASE CAUCUS, CHAIRED BY REP. BETTY MCCOLLUM, WAS CREATED AND LAUNCHED IN 2021 IN RESPONSE TO THE FOUNDATION'S WORK. THE CELIAC DISEASE FOUNDATION WAS A FOUNDING MEMBER OF THE AMERICAN CELIAC DISEASE ALLIANCE (ACDA), WHICH ACHIEVED THE 2014 FDA GLUTEN-FREE LABELING RULE, AND IT IS ACTIVELY INVOLVED WITH THE NATIONAL INSTITUTES OF HEALTH (NIH), THE DEPARTMENT OF DEFENSE (DOD), AND THE FOOD & DRUG ADMINISTRATION (FDA) TO ELEVATE THE VOICE OF THE CELIAC PATIENT COMMUNITY. IN ADDITION TO INCREASING THE LEVEL OF NIH FUNDING FOR THE STUDY OF CELIAC DISEASE AND ENSURING THIS DISEASE CONTINUES TO BE INCLUDED IN THE DOD CONGRESSIONALY DIRECTED MEDICAL RESEARCH PROGRAMS-PEER REVIEWED MEDICAL RESEARCH PROGRAM, OUR POLICY PRIORITIES INCLUDE: IMPROVING FOOD LABELING REQUIREMENTS TO MAKE IT SAFER AND EASIER FOR PEOPLE WITH CELIAC DISEASE TO PURCHASE FOOD ITEMS THROUGH THE FOOD LABELING MODERNIZATION ACT OF 2023, EXTENDING MEDICARE AND MEDICAID COVERAGE FOR MEDICAL NUTRITION THERAPY TO BENEFICIARIES WITH CELIAC DISEASE THROUGH THE MEDICAL NUTRITION THERAPY ACT OF 2023, PROTECTING CHRONIC DISEASE PATIENTS FROM DISCRIMINATION AND BOLSTERING PATIENT PROTECTIONS, ADVOCATING FOR CONTINUED FDA FUNDING FOR ENFORCEMENT OF THE GLUTEN-FREE LABELING RULE, AND PROTECTING AND STRENGTHENING SNAP AND OTHER ANTI-HUNGER PROGRAMS. INTERNATIONALLY, THE FOUNDATION IS AN AFFILIATE MEMBER OF THE ASSOCIATION OF EUROPEAN COELIAC SOCIETIES (AOECS), REPRESENTING NORTH AMERICAN INTERESTS THROUGH WORLDWIDE COLLABORATION ON CELIAC DISEASE ADVOCACY INITIATIVES. EDUCATIONTHE CELIAC DISEASE FOUNDATION PROVIDES THE PUBLIC WITH INNOVATIVE TOOLS AND EVENTS TO PROMOTE VITAL CELIAC DISEASE EDUCATION. THROUGH CELIAC.ORG, WE ASSIST PATIENTS AND FAMILY MEMBERS THROUGH INITIATIVES LIKE THE SYMPTOMS ASSESSMENT TOOL, DESIGNED TO FACILITATE COMMUNICATION BETWEEN PATIENTS AND THEIR HEALTHCARE PRACTITIONERS; A NATIONWIDE DIRECTORY OF PRACTITIONERS SPECIALIZING IN CELIAC DISEASE; EAT! GLUTEN-FREE, A GLUTEN-FREE RECIPE HUB WITH TAILORED MEAL PLANS TO HELP THE NEWLY DIAGNOSED AND THEIR FAMILIES EASE THE TRANSITION TO A GLUTEN-FREE DIET; AND THE CELIAC DISEASE MANAGEMENT PLAN FOR SCHOOL TRAINING PROGRAM. THE FOUNDATION ALSO RECENTLY LAUNCHED A SUITE OF VIRTUAL PROGRAMMING AIMED AT VARIOUS AUDIENCES: INNOVATIONS IN CULINARY MEDICINE WEBINARS, TO BRING TOGETHER RESEARCH, EDUCATION, AND CULINARY EDUCATION; CELIAC TEEN TALK, TO ENGAGE PATIENTS AGES 12-17 WITH THEIR PEERS; LIVING WITH CELIAC VIRTUAL MEETUPS, TO HELP NEWLY DIAGNOSED PATIENTS AND CAREGIVERS; AND SCHOOL SUPPORT SESSIONS, THE FIRST EVER NATIONAL CELIAC DISEASE EDUCATION PARTNERSHIP WITH BOSTON CHILDREN'S HOSPITAL, THE UNIVERSITY OF CHICAGO CELIAC DISEASE CENTER, AND THE MAYO CLINIC TO ASSIST PARENTS OF STUDENTS FROM EARLY CHILDHOOD THROUGH COLLEGE WITH NAVIGATING 504 PLANS AND SCHOOL ACCOMMODATIONS. THE FOUNDATION HAS A ROBUST, GLOBAL REACH THROUGH CELIAC.ORG, SOCIAL MEDIA CHANNELS, AND OUR MONTHLY E-NEWSLETTER. THE FOUNDATION ALSO PROVIDES ROBUST TOOLS AND PROGRAMMING FOR HEALTHCARE PROFESSIONALS, INCLUDING THE ONLINE NASPGHAN CLINICAL GUIDE FOR PEDIATRIC CELIAC DISEASE AND THE CELIAC DISEASE AND PSYCHOLOGICAL HEALTH TRAINING PROGRAM. OUR PEER-TO-PEER FUNDRAISING PROGRAM, TEAM GLUTEN-FREE (TGF), PROVIDES A SIMPLE WAY FOR ATHLETES AND NON-ATHLETES ALIKE TO RAISE AWARENESS AND FUNDS FOR THE FOUNDATION'S PROGRAMS AND EMPOWERS OUR COMMUNITY TO CREATE POSITIVE CHANGE AT A GRASSROOTS LEVEL.
Name (title) | Role | Hours | Compensation |
---|---|---|---|
Bradley Herrema Board Secretary | OfficerTrustee | 2 | $0 |
John Wagner Vice Chair | OfficerTrustee | 2 | $0 |
Jordan Ramer Treasurer | OfficerTrustee | 2 | $0 |
Adrienne Bender Board Chair | OfficerTrustee | 2 | $0 |
Lee Jones Development Committee Chair | Trustee | 2 | $0 |
Jamie Resin Member | Trustee | 2 | $0 |
Statement of Revenue | |
---|---|
Federated campaigns | $0 |
Membership dues | $0 |
Fundraising events | $0 |
Related organizations | $0 |
Government grants | $0 |
All other contributions, gifts, grants, and similar amounts not included above | $1,927,788 |
Noncash contributions included in lines 1a–1f | $182,376 |
Total Revenue from Contributions, Gifts, Grants & Similar | $1,927,788 |
Total Program Service Revenue | $2,154,436 |
Investment income | $90,475 |
Tax Exempt Bond Proceeds | $0 |
Royalties | $0 |
Net Rental Income | $0 |
Net Gain/Loss on Asset Sales | $34,643 |
Net Income from Fundraising Events | $0 |
Net Income from Gaming Activities | $0 |
Net Income from Sales of Inventory | $0 |
Miscellaneous Revenue | $0 |
Total Revenue | $4,203,443 |
Statement of Expenses | |
---|---|
Grants and other assistance to domestic organizations and domestic governments. | $249,000 |
Grants and other assistance to domestic individuals. | $0 |
Grants and other assistance to Foreign Orgs/Individuals | $0 |
Benefits paid to or for members | $0 |
Compensation of current officers, directors, key employees. | $486,071 |
Compensation of current officers, directors, key employees. | $69,479 |
Compensation to disqualified persons | $0 |
Other salaries and wages | $779,153 |
Pension plan accruals and contributions | $31,773 |
Other employee benefits | $170,606 |
Payroll taxes | $93,554 |
Fees for services: Management | $0 |
Fees for services: Legal | $6,972 |
Fees for services: Accounting | $85,868 |
Fees for services: Lobbying | $0 |
Fees for services: Fundraising | $0 |
Fees for services: Investment Management | $16,499 |
Fees for services: Other | $0 |
Advertising and promotion | $0 |
Office expenses | $25,935 |
Information technology | $60,387 |
Royalties | $0 |
Occupancy | $39,915 |
Travel | $0 |
Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
Conferences, conventions, and meetings | $72,490 |
Interest | $0 |
Payments to affiliates | $0 |
Depreciation, depletion, and amortization | $25,236 |
Insurance | $11,295 |
All other expenses | $70,903 |
Total functional expenses | $2,975,235 |
Balance Sheet | |
---|---|
Cash—non-interest-bearing | $1,086,120 |
Savings and temporary cash investments | $529,567 |
Pledges and grants receivable | $343,759 |
Accounts receivable, net | $334,779 |
Loans from Officers, Directors, or Controlling Persons | $0 |
Loans from Disqualified Persons | $0 |
Notes and loans receivable | $0 |
Inventories for sale or use | $0 |
Prepaid expenses and deferred charges | $21,336 |
Net Land, buildings, and equipment | $212,053 |
Investments—publicly traded securities | $0 |
Investments—other securities | $3,352,031 |
Investments—program-related | $0 |
Intangible assets | $0 |
Other assets | $80,209 |
Total assets | $5,959,854 |
Accounts payable and accrued expenses | $159,090 |
Grants payable | $139,092 |
Deferred revenue | $335,608 |
Tax-exempt bond liabilities | $0 |
Escrow or custodial account liability | $0 |
Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
Secured mortgages and notes payable | $0 |
Unsecured mortgages and notes payable | $0 |
Other liabilities | $0 |
Total liabilities | $633,790 |
Net assets without donor restrictions | $5,294,564 |
Net assets with donor restrictions | $31,500 |
Capital stock or trust principal, or current funds | $0 |
Paid-in or capital surplus, or land, building, or equipment fund | $0 |
Retained earnings, endowment, accumulated income, or other funds | $0 |
Total liabilities and net assets/fund balances | $5,959,854 |
Over the last fiscal year, Celiac Disease Foundation has awarded $249,000 in support to 3 organizations.
Grant Recipient | Amount |
---|---|
COLUMBIA UNIVERSITY PURPOSE: CELIAC DISEASE RESEARCH | $54,000 |
BOSTON'S CHILDREN'S HOSPITAL PURPOSE: CELIAC DISEASE RESEARCH | $15,000 |
US DAVIS PURPOSE: CELIAC DISEASE RESEARCH | $180,000 |