Crohn's & Colitis Foundation

Crohn's & Colitis Foundation
Name	Crohn's & Colitis Foundation
Founded	1967
Founder	Gustav Bornstein; Shelby Modell; Irwin M. Rosenberg
Headquarters	New York, New York
Type	Nonprofit organization
Purpose	Support research, advocacy, patient education for inflammatory bowel diseases

Crohn's & Colitis Foundation is a nonprofit organization dedicated to improving the lives of people with inflammatory bowel diseases through research funding, patient support, advocacy, and education. The foundation engages with scientific institutions, medical centers, pharmaceutical companies, legislators, and patient communities to advance understanding of Crohn's disease and ulcerative colitis and to accelerate development of treatments.

History

The organization was established in 1967 amid growing clinical interest in inflammatory bowel conditions and interactions with academic centers such as Columbia University, Harvard Medical School, Mayo Clinic, Cleveland Clinic, and Johns Hopkins University. Early leadership drew on clinicians and patients linked to hospitals like Mount Sinai Hospital (Manhattan), Massachusetts General Hospital, and research programs associated with the National Institutes of Health, Centers for Disease Control and Prevention, and partnerships with foundations such as the American Cancer Society. Over decades the foundation expanded from local chapters in cities like New York City, Chicago, Los Angeles, San Francisco, and Boston to a national presence aligned with legislative efforts in state capitols including Albany, New York, Sacramento, California, and Austin, Texas. Milestones included creation of patient education materials in collaboration with editorial partners such as The New York Times and clinical guideline contributions referenced by specialty societies like the American College of Gastroenterology and the American Gastroenterological Association.

Mission and Programs

The foundation’s mission emphasizes research acceleration, patient support, and public policy engagement, coordinating programs with academic nodes at Stanford University, University of California, San Francisco, Yale University, Duke University, and University of Pennsylvania. Programs include funding for investigator-initiated trials connected to clinical sites such as Mount Sinai Hospital (Manhattan), translational projects involving the Broad Institute, biobanking efforts with laboratory networks including Fred Hutchinson Cancer Center and technology partnerships with industry leaders like Pfizer, Johnson & Johnson, and AbbVie. Educational initiatives link to professional meetings such as the American College of Gastroenterology Annual Scientific Meeting and patient events modeled after conferences like SXSW and community outreach in collaboration with charities like United Way.

Research and Grants

Research funding from the foundation has supported basic science at institutions such as Massachusetts Institute of Technology, genetic studies with collaborators at the Wellcome Trust Sanger Institute, immunology research at La Jolla Institute for Immunology, and microbiome projects with teams at Cold Spring Harbor Laboratory. Grant programs include career development awards analogous to those from the Howard Hughes Medical Institute and project grants comparable to National Science Foundation awards, supporting investigators who have later taken positions at centers like University of Chicago, Washington University in St. Louis, and Emory University; funded research has contributed to trials involving biologic agents developed by companies such as Amgen and Takeda. Collaborative consortia have included data-sharing with repositories influenced by models like the Human Genome Project and population cohorts similar to the Framingham Heart Study.

Patient Support and Education

Patient services encompass helplines, educational webinars, and printed resources developed with medical reviewers from Cleveland Clinic and Johns Hopkins Hospital, as well as peer support networks resembling programs run by American Diabetes Association and American Heart Association. Local chapter meetings occur in metropolitan areas including Philadelphia, Atlanta, Houston, Seattle, and Denver and integrate patient advocacy training used in campaigns by organizations like Planned Parenthood and League of Women Voters. Materials address clinical topics referenced in guidelines from the World Health Organization and professional standards disseminated by the American Medical Association.

Advocacy and Public Policy

Advocacy efforts have targeted federal policy in coordination with offices on Capitol Hill and policy organizations such as The Brookings Institution and Kaiser Family Foundation, and have influenced legislation overseen by committees like the United States House Committee on Energy and Commerce and the United States Senate Committee on Health, Education, Labor, and Pensions. State-level advocacy has engaged governors and legislatures in states such as Florida, Texas, and New York and partnered with coalitions modeled after campaigns by AARP and March of Dimes to address access to medications, insurance coverage, and research funding priorities.

Funding and Financials

The foundation's revenue streams include individual donations, major gifts, corporate sponsorships from pharmaceutical and biotech firms such as Roche and Bristol Myers Squibb, and fundraising events inspired by formats used by Susan G. Komen, Alzheimer's Association, and Make-A-Wish Foundation. Financial oversight follows nonprofit governance practices observed by organizations like United Way Worldwide and reporting standards analogous to those promulgated by the Financial Accounting Standards Board, with audits performed by accounting firms similar to Deloitte and PwC.

Partnerships and Awards

Strategic partnerships include collaborations with academic centers such as Columbia University Irving Medical Center, industry partners like Novartis, and global organizations such as the World Gastroenterology Organisation, with award programs honoring researchers in a manner similar to the Lasker Award and the Howard Florey Medal. The foundation recognizes clinicians and scientists through named awards and fosters alliances with patient groups akin to Crohn's and Colitis UK and research networks modeled after the European Crohn's and Colitis Organisation.

Category:Non-profit organizations based in New York City