EIN 90-0108854

Beyond Celiac

IRS 501(c) type
501(c)(3)
Num. employees
24
City
Year formed
2003
Most recent tax filings
2022-10-01
Description
Beyond Celiac advances widespread understanding of celiac disease as a serious genetic autoimmune condition and works to secure early diagnosis and effective management.
Also known as...
National Foundation for Celiac Awareness
Total revenues
$2,656,405
2022
Total expenses
$2,550,939
2022
Total assets
$4,645,706
2022
Num. employees
24
2022

Program areas at Beyond Celiac

Research in the field of Celiac disease and related disorders Beyond Celiac offers grants to members of the research and medical communities who are advancing Celiac disease research. Using a patient-centered approach and working with the Beyond Celiac scientific advisory board, Celiac disease scientists are making discoveries about Celiac disease with help from Beyond Celiac grants. Beyond Celiac awards major Celiac disease research grants that will accelerate research in Celiac disease, non-celiac gluten sensitivity ("gluten sensitivity") and associated disorders to advance treatments Beyond the gluten-free diet and, one day, a cure. Recent major grant awards: paul klenerman, phd, a professor of gastroenterology at the university of oxford, oxford, england, received the Beyond Celiac established investigator award. He is studying killer t-cells that cause the actual tissue damage in Celiac disease. Jocelyn silvester, md, director of research of the Celiac disease program at boston children's hospital, is the recipient of the Beyond Celiac pilot and feasibility grant. Her study is using rna sequencing of a series of biopsies collected during an earlier gluten-challenge study. Silvester is then checking the accuracy of the sequencing method on the biopsies previously taken for diagnosis and follow-up on another group of patients. Arnold han, md, phd, of columbia university, was granted the Beyond celiac-society for the study of Celiac disease (sscd) early career research award. He is investigating the role of cd8 t-cells to establish antigen specificty. The study will also investigate Celiac disease mechanisms through an invitro model, called an organoid. This research is a joint venture that aims to correct a significant gap in the gastrointestinal and autoimmune disease research portfolio. Nigel hoggard, md and iain croall, phd, of the university of sheffield, uk, received a Beyond Celiac established investigator award to research neuropathology of Celiac disease and gluten-related disorders. Neuropsychological impairment in people with Celiac disease can be as or more debilitating than their gastrointestinal symptoms, and it has been overlooked. Their study is focusing on how effectively the gluten-free diet treats these neurological problems and will further investigate long-term effects on cognitive function, severity of depression and anxiety symptoms and overall quality of life. Research partnerships: Beyond Celiac and the National minority quality forum (nmqf) have partnered to target inequities in Celiac disease diagnosis, treatment this unique partnership focuses on the disparity in diagnosis of Celiac disease and is building a new equitable path forward by investigating the extent of undiagnosed Celiac disease, particularly among non-caucasians. Medicare and medicaid data is being used to map diagnosed Celiac disease across the united states and to identify potentially missed and misdiagnosis of the disease, particularly among underserved populations. Beyond Celiac has partnered with janssen pharmaceuticals to support critical Celiac disease research. Beyond Celiac is proud to announce a commitment of up to 1 million in funds and services over three years. Beyond Celiac and janssen will co-fund multiple grants supporting research focusing on risk detection, prevention, interception and cure of Celiac disease. Emphasis will be placed on gaining an increased understanding of areas such as the gut microbiome, induction of immune tolerance and biomarkers of risk and progression.
Beyond Celiac research summits Beyond Celiac has hosted research summits because so many needs remain unmet for the Celiac disease community. Beyond Celiac has produced Beyond Celiac research summits since 2018, including a summit in 2022 entitled the evolving landscape of Celiac disease bringing together stakeholders crucial to accomplishing the goal of developing new Celiac disease treatments. The 2022 Beyond Celiac research summit was a critical next step in working together to deliver treatment options to everyone who wants and needs them. These research summits bring together clinician scientists, patients, entrepreneurial drug developers, patient advocacy leaders, private and public health care insurance and food and drug administration representatives. Each summit has several panel discussions such as outlining the challenges that the Celiac community faces in managing Celiac disease, experiences that community members have had in participating in clinical trials, drug development, challenges to developing non-dietary therapies for Celiac disease and barriers to research. Beyond Celiac will hold a community summit in 2023 hosting over 200 participants. Community summit participants have the opportunity to share their experiences with Celiac disease, "together for a cure."
Go Beyond Celiac: we can, we will go Beyond Celiac, a major Beyond Celiac program, is an online Celiac disease patient registry and app that collects data to accelerate research for Celiac disease. This is a place where patients can actively participate in research by sharing their stories and experiences to help improve diagnosis and further research toward treatments and a cure for this serious autoimmune disease. This helps researchers and healthcare professionals to have a better understanding of how Celiac disease develops. Participants also can learn about how they can join research studies and stay up to date on the latest in Celiac disease science. Go Beyond Celiac collects self-reported data to improve understanding of Celiac disease. As a member of the go Beyond Celiac community, participants will be able to add their experiences to the larger Celiac disease picture and see how it compares to others. Participants can track their health and store their Celiac disease-related data and history in one safe place. Go Beyond Celiac collects and analyzes comprehensive data on the burden of Celiac disease and gluten sensitivity. With this information, Beyond Celiac can increase Awareness and make a compelling case for larger investments from government agencies, pharmaceutical companies, biotech and more to advance research. Through go Beyond Celiac, participants can get information on the latest in clinical trials for Celiac disease, including which trials are currently recruiting and how patients can get involved. Currently, over 8,200 participants have joined go Beyond Celiac to share their self-reported data to improve understanding of Celiac disease. This will help increase diagnosis and further research toward new treatments and a cure.
Research grants have been issued to further the research and study of Celiac disease.

Grants made by Beyond Celiac

GranteeGrant descriptionAmount
Columbia UniversityResearch$194,400

Who funds Beyond Celiac

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
National Philanthropic TrustHealth$150,000
The Rhode Island FoundationResearch$100,000
Thomas W Haas FoundationCharitable$97,200
...and 41 more grants received totalling $929,903

Personnel at Beyond Celiac

NameTitleCompensation
Alice BastChief Executive Officer$243,245
Mary Kate CarofanoChief Administrative Officer$162,599
Salvatore AlesciCsso$203,596
Gerald BertigerTreasurer$0
Alan EhrlichChair$0
...and 4 more key personnel

Financials for Beyond Celiac

RevenuesFYE 10/2022
Total grants, contributions, etc.$1,726,718
Program services$505,293
Investment income and dividends$136,463
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$0
Net income from fundraising events$287,931
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$2,656,405

Form 990s for Beyond Celiac

Fiscal year endingDate received by IRSFormPDF link
2022-102023-03-15990View PDF
2021-102022-02-25990View PDF
2020-102021-04-13990View PDF
2019-102020-10-19990View PDF
2018-102019-05-14990View PDF
...and 10 more Form 990s
Data update history
October 23, 2023
Received grants
Identified 4 new grant, including a grant for $12,500 from W P Carey Foundation (WPCF)
July 22, 2023
Received grants
Identified 21 new grant, including a grant for $128,000 from The Seidenberg Family Foundation
June 22, 2023
Posted financials
Added Form 990 for fiscal year 2021
June 18, 2023
Posted financials
Added Form 990 for fiscal year 2022
June 16, 2023
Updated personnel
Identified 5 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyConducts researchFundraising eventsOperates internationallyNational levelEndowed supportCommunity engagement / volunteeringGala fundraisersFundraising races, competitions, and tournamentsTax deductible donations
General information
Address
PO Box 544
Ambler, PA 19002
Metro area
Philadelphia-Camden-Wilmington, PA-NJ-DE-MD
County
Montgomery County, PA
Website URL
beyondceliac.org/ 
Phone
(215) 325-1306
IRS details
EIN
90-0108854
Fiscal year end
October
Taxreturn type
Form 990
Year formed
2003
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G80: Specifically Named Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
Free account sign-up

Want updates when Beyond Celiac has new information, or want to find more organizations like Beyond Celiac?

Create free Cause IQ account