Crohn's & Colitis Foundation Inc. HQ

Uniting to Care and Cure

Mission

To find a cure for Crohn's disease and ulcerative colitis and to improve the quality of life of children and adults affected by these diseases. Crohn's disease and ulcerative colitis are collectively known as inflammatory bowel diseases (IBD).

Ruling year info

1966

President / CEO

Mr. Michael Osso

Main address

733 Third Ave Suite 510

New York, NY 10017 USA

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EIN

13-6193105

NTEE code info

Specifically Named Diseases (G80)

Digestive Diseases, Disorders (G70)

Other Medical Research N.E.C. (H99)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Founded in 1967, the Crohn’s & Colitis Foundation is committed to its mission to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases. Collectively known as inflammatory bowel diseases (IBD), Crohn's disease and ulcerative colitis are chronic, complicated, and unpredictable diseases which are estimated by the Centers for Disease Control to affect as many as 3.1 million children and adults in the United States. The often-debilitating symptoms of IBD include persistent diarrhea, severe abdominal pain, rectal bleeding, fever, malnutrition, and life-threatening complications. Many patients suffer in silence, feeling isolated and alone in dealing with symptoms which can be embarrassing for some and are life-altering for all. To date, the Crohn’s & Colitis Foundation has played a role in every major research breakthrough while empowering patients and caregivers through education, support, and advocacy programs.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Research Programs

The Crohn's & Colitis Foundation is a leading supporter and founder of medical research in Crohn's disease and ulcerative colitis—collectively known as inflammatory bowel diseases (IBD). We invest our dollars wisely, funding the best IBD research anywhere in the world and implementing a peer-review process that insures that only the most promising and relevant grant applications are funded. With more than 1000 grants awarded the foundation has played a role in every major scientific breakthrough in IBD, from generating data that led to new therapies to the discovery of the first gene for Crohn's disease. The foundation supports both Basic and Clinical research. Basic research studies the complex interactions between genes, bacteria, and the immune response in IBD. Foundation-sponsored research has led to breakthrough discoveries in the role that genetics and the human microbiome play in IBD onset and progression, and we are establishing the largest research and information exchange ever created to accelerate the development of better treatments and cures. Our grants and fellowships nurture and enable researchers at every stage of their careers.

Population(s) Served

Take Steps walks offer a wonderful day for family, friends and the community to celebrate all of the efforts that have been put forth in raising funds towards our mission. Our walk events are filled with live music, food, kids’ entertainment, educational materials, and, of course, wonderful exposure for our corporate partners. Take Steps for Crohn’s & colitis is a family friendly community walk dedicated to raising awareness and mission-critical funds for cures for digestive diseases. In the past five years alone, we succeeded in bringing together over 240,000 people and raised nearly $60 million to help further the Foundation's mission.

Population(s) Served

Team Challenge is an endurance training and fundraising program unlike any other. Team Challenge is one of the premier endurance training programs in the country. As a Team, participants will challenge themselves, change lives and fundraise for cures for Crohn's disease and ulcerative colitis - two painful, debilitating, and seldom-discussed digestive diseases that affect 1 in 200 Americans, including 80,000 children nationwide. Participants can either run, walk a half marathon, train for a triathlon, or ride in a great cycling event at one of our amazing destination races. In exchange for fundraising, Team Challenge participants receive a custom training plan and professional coaching throughout the season. Additionally, the training program includes clinics and helpful tips on topics like nutrition, hydration, and injury prevention. Participants also receive an expenses-paid weekend at a great destination race including race registration fees, lodging, pasta party and post race celebration.

Population(s) Served

As part of our mission to educate and inform the public about inflammatory bowel disease (IBD), the Crohn's & Colitis Foundation publishes free educational brochures and fact sheets that provide current information and treatment options about this condition for patients. The Foundation hosts educational programs across the country for patients, also provides a list consisting of leading Crohn’s and ulcerative colitis doctors, researchers, nurses and other healthcare professionals.

Population(s) Served

Where we work

Accreditations

Better Business Bureau Wise Giving Alliance 2015

Charity Navigator 2015

Affiliations & memberships

Better Business Bureau 2015

Combined Federal Campaign 2015

Community Health Charities 2015

United Way Member Agency 2015

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Helping to guide and accelerate all that the Crohn’s & Colitis Foundation does for the IBD community, the Foundation’s current Strategic Plan is our road map to achieving objectives set in our central priorities: Research; Education, Support & Advocacy; Traditional Revenue; and Non-Traditional Revenue. The Strategic Plan was developed to leverage promising opportunities to advance research and the development of new treatments, with the individual IBD patient at the heart of all planning.

OVERARCHING AIM: Research

The Crohn’s & Colitis Foundation invests in research in order to more quickly understand what causes IBD, find a way to predict the risk of complications, find the right therapy for each patient, and discover cures. Since its founding, the Foundation has invested more than $384 million in research. The Foundations funds cutting-edge research studies and clinical trials at major medical institutions and finances underdeveloped areas of research. We enthusiastically nurture investigators in the early stages of their career to help build the next generation of IBD researchers.

OVERARCHING AIM: Education, Support & Advocacy

The Crohn’s & Colitis Foundation works to empower patients, loved ones, and care providers with relevant and timely facts about IBD and provide ongoing support by bringing the IBD community together. Leveraging the potential for interconnections and synergies among patient education and support, professional education, and advocacy, we address: cost and access to care, shared decision making, and maximizing the quality of care for patients, while acknowledging and concentrating on the patient journey.

OVERARCHING AIM: Traditional Revenue

The Foundation empowers volunteers to expand the network of donors and volunteers, develop enduring relationships, and drive increased contributed support.

OVERARCHING AIM: Non-Traditional Revenue

The Foundation forms strategic partnerships with entities that emanate from and advance specific mission activities.

1. Mindful of the patient journey, we embrace a patient-centric approach to all decision-making and mission delivery.

2. We generate, disseminate, and use data to inform and drive decisions to maximize revenue generation and mission activities.

3. We demonstrate measurable impact by tailoring communications to segmented stakeholder groups to inspire hope and action.

4. We ensure a Class A team of staff and volunteers to power organizational priorities.

5. We build partnership and collaboration into every aspect of the business.

Commended by the National Institutes of Health, the Crohn’s & Colitis Foundation is the leading advocate for patients and the hub of the IBD community - which includes patients, caregivers, clinicians, researchers, volunteers, donors, commercial partners, and other non-profits. The Foundation engages the largest community of IBD patients in the country and maintains collaborations with partners that add value to IBD research or assist in improving patients’ quality of life.

The Crohn’s & Colitis Foundation has strong and dedicated leadership and a solid track record in uniting and serving the IBD community. The collaborative and patient-centric approach of its mission activities and world-renowned work with the best clinicians and researchers in IBD care are qualifications unique to the Foundation.

To date, Crohn’s & Colitis Foundation has played a role in every major research breakthrough in IBD. This includes contributing significantly to the current hypothesis of the cause of IBD, and driving research to find new uses for existing therapies, enhance the effectiveness of medications, and to minimize harmful side effects. In addition, the Foundation has developed a wide and comprehensive range of educational programs for patients and healthcare professionals, while providing supportive services to help people cope with these chronic diseases.

ACCELERATING THE PACE OF RESEARCH

We have accelerated research by breaking down traditional barriers to patients, data, funding, and collaborations. Specifically,
• IBD Plexus: We have launched this large and unique database and biosample repository to enable our research partners to cut years off¬ the research process.
• IBD Ventures: We are investing in innovative products now in development by biotech companies and academics to significantly accelerate the pace of getting new treatments, devices, and diagnostic tools to clinicians and their patients.

LEVERAGING YEARS OF MAJOR, FOUNDATIONAL RESEARCH INVESTMENTS

Our multi-year, multi-million-dollar research investments in areas that are important to IBD are paying o¬ff:
• We are furthering Pediatric RISK study findings to develop a test to predict disease severity at diagnosis.
• Microbiome—We are building on our early findings to develop therapeutic bacterial cocktails to treat IBD.
• Genetics—We are now leveraging the extensive work we have done, in order to develop new drugs that target genetically controlled pathways in IBD.

CATALYZING CRITICAL RESEARCH IN NEW DOMAINS

We have led the way with millions of dollars of research investment in new, critically important areas of environmental disease triggers such as diet and stress.

INSPIRING AND ENGAGING PATIENTS/CAREGIVERS IN THE COUNTRY’S LARGEST IBD COMMUNITY

We bring together the largest community of IBD patients in the country, and we engage them in the fight against Crohn’s & colitis. Patients are involved in:
• Setting our research priorities
• Contributing data and biosamples to accelerate research
• Helping design our educational efforts alongside our scientific advisors
• Advocating for key public policy issues to legislators

BUILDING RESILIENCY AND EMPOWERING PATIENTS

We are increasing support and education for patients and caregivers in the effort to build resiliency and further empower them to take charge of their care, essential keys to wellness.
• Live support groups
• Web support groups
• Camp Oasis for pediatric patients
• Shared decision-making programs

Financials

Crohn's & Colitis Foundation Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Crohn's & Colitis Foundation Inc.

Board of directors
as of 5/28/2020
SOURCE: Self-reported by organization
Board chair

John Crosson

Andrew Stern

Eric Stone

Jennifer O'Neill

Christopher Collette

Maria Oliva-Hemker

John Crosson

Amber Bakhaus

Noel Brown

Jason Burr

Christopher Collette

Vance Gibbs

Donald Kortz

Mark Murray

Marcy Nanus

Robert "Van" Pully

Brent Polk

Alessandro DiNello

Alex Funderburg

Michele Kissous-Hunt

Joseph Monk

Cynthia Roth

Frank Russomano

Jodi Yellen

Ander Crenshaw

Paula HIlbert

Scott Snapper

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    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
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes