Crohn’s & Colitis Foundation 101

The Crohn’s & Colitis Foundation is a volunteer-driven ​nonprofit organization. Thank you for donating your ​time and skills to improve the lives of IBD patients.

Since our founding in 1967, the Foundation has played ​a role in every major breakthrough in IBD research. ​We have invested more than $400 million into finding ​the causes, treatments, and cures for Crohn’s disease ​and ulcerative colitis. We are a non-profit, volunteer-​fueled organization. Thank you for joining us to ​improve the quality of life for IBD patients.

To cure Crohn's disease and ulcerative colitis, and to improve the quality of life of ​children and adults affected by these diseases

To cure Crohn's disease and ulcerative colitis, and to improve the quality of life of ​children and adults affected by these diseases

Research Programs

The Crohn's & Colitis Foundation has provided more than $350 million for ​research on the treatment and cures of IBD.

Education Programs

The Crohn's & Colitis Foundation provides information and education for ​the millions of IBD patients and their families through various channels at ​the national and local levels.

Support Services

Support services are delivered through virtual, in-person, and Facebook ​support groups and Camp Oasis.

Advocacy

IBD patients, their family, friends, caregivers, and doctors raise their ​voices and become actively involved in advancing our public policy goals ​(i.e., better access to insurance and medication) and increased research ​funding (i.e., National Institutes of Health, Food and Drug Administration)

Quality of Care

IBD Qorus™ is the Crohn's & Colitis Foundation's national quality of care ​initiative that seeks to identify, implement, and improve standard ​practices for treating patients with Crohn's disease and ulcerative colitis.

Clinical Trials Community

Education and support for patients interested in participating in clinical ​trials, an essential step in the drug development process, to accelerate ​time to market and expand the number of treatment options for IBD ​patients.

Fundraising Initiatives

Ongoing fundraising efforts enable us to fund further research, ​educational, and patient support activities.

IBD Ventures

Grant issued to researchers developing products to improve the quality of ​life of IBD patients

IBD Plexus:

Platform designed to propel IBD research, making data from tens of ​thousands of IBD patients available to healthcare professionals

IBD Qorus:

Collaboration between patients and healthcare providers to increase the ​quality of care for all IBD patients

IBD SIRQC:

Long-term surgery study

Gut Friendly Recipes:

Online recipe search tool

IBD Medication Guide:

Online guide of all available medications for patients with Crohn’s disease ​and ulcerative colitis

We Can’t Wait App:

More than 50,000 restrooms nationwide are featured, helping millions of ​people with urgent restroom needs find an available restroom when they ​are away from home

Camp Oasis:

Summer and virtual camp for IBD pediatric patients

MyIBDLearning:

In-person and web-based educational events

Support Groups:

Virtual, in-person, and Facebook

Spill Your Guts:

Public service awareness campaign

Restroom Access Survey:

A nationwide survey demonstrating the critical shortage of public ​restrooms

Spanish-language resources:

New Spanish-language website and support options

Step Therapy Reform:

There are now 34 states with step therapy laws, allowing decisions about ​patient medications to remain between the clinician and patient—and not ​the patient and their insurance company

Professional Education:

Educational programs and resources for healthcare professional partners

Mission Pillar

Objective #1

Expanding patient and caregiver ​engagement

Expand the active involvement of ​patients and caregivers in the ​development and execution of the ​Foundation's mission strategic ​objectives in order to ensure more ​inclusive programming that meets ​patient needs

Objective #2

Improving access to care

Improve access to timely diagnosis and ​management of care for patients with ​IBD through a variety of methods, ​including education, awareness, ​advocacy, and use of real-world data ​(health-related data generated directly ​from patients or during routine clinical ​care), in order to improve health ​outcomes

Objective #3

Improving remission rates

Improve IBD patient remission rates ​through initiatives focused on the key ​drivers of disease diagnosis, ​progression, and management in order ​to improve the quality of life of patients ​living with these diseases

Objective #4

Advancing new therapies and ​innovative products

Advance new therapies and ​innovative products by supporting ​the discovery and development of ​those that address unmet patient ​needs across diverse populations, ​leading to improvements in patient ​quality of life and cures

Objective #5

Supporting a pipeline of committed ​clinicians and researchers

Attract, support, and develop a ​pipeline of innovative and successful ​clinicians and researchers to advance ​the Foundation's research priorities ​and educational programs

Revenue Pillar

Objective #1

Expanding our reach

Expand the total number of people ​connected with the Foundation through ​involvement with mission programs, ​awareness-building efforts, and ​fundraising activities to drive greater ​volunteerism and support

Objective #2

Increasing engagement with principal ​supporters

Deepen engagement with the ​Foundation’s top 20% of volunteers, ​fundraisers, and funders to drive an ​increase in their giving and expand their ​partnership in driving increased support ​from other stakeholders

Objective #3

Pursuing high-margin opportunities

Expand successful revenue streams ​with high profitability margins that ​exhibit potential for continued growth

Objective #4

Capitalizing on new trends

Build on several newly-emerging ​revenue generation trends, including ​Do-It-Yourself (DIY) fundraising ​activities and virtualized events

Objective #5

Supporting a pipeline of committed ​clinicians and researchers

Attract, support, and develop a pipeline ​of innovative and successful clinicians ​and researchers to advance the ​Foundation's research priorities and ​educational programs

The Irwin M. and Suzanne R. Rosenthal IBD Resource Center, also known as the ​IBD Help Center, provides information and resources to patients, caregivers, ​and healthcare providers about inflammatory bowel disease (IBD).

Get personal answers from knowledgeable information specialists

The IBD Help Center can:

• Help patients find specific resources
  
• Refer patients to other organizations
  
• Help patients understand their health insurance coverage
  
• Communicate with patients in over 170 languages
  

Our free brochures cover a wide range of topics relating to IBD, including ​surgery, diet and nutrition, and possible complications. To receive hard ​copies of these brochures through the mail, fill out our brochure order form ​or download a printable copy.

For more information on the IBD Help Center, click Here

Disease Specific Information

Financial & Insurance Resources

Diet Concerns

Treatment Options

Support/Coping Resources

How to Find a GI

Latest Research

Clinical Trials

Disability

Advocacy Resources

Diagnostic Testing

Meet the Team

MyIBD Learning connects patients and caregivers of all ages with information ​and resources on Crohn’s disease and ulcerative colitis — to support you at ​every stage of your IBD journey. We offer in-person, virtual, and on-demand ​education programs to bring you the very latest in inflammatory bowel ​disease (IBD) research, treatments, therapies, clinical trials, and more from ​leading healthcare professionals and patient advocates.

Residential camp sessions offer a variety of ​fun activities, outdoor adventures, and ​educational opportunities that will build ​confidence and facilitate new friendships. We ​also recognize that not all families will be ​comfortable sending their child to in-person ​camp which is why we offer ​CampOasis@Home. This virtual program ​offers interactive sessions that provide many ​of the same benefits of residential camp ​including making new friends, trying new ​things, and having lots of fun!

A Life-Changing Experience

Since all of the campers (and many of the ​adults) at Camp Oasis are living with IBD, our ​supportive community allows them to:

• See that they are not alone
• Try all sorts of new sports and activities
• Create friendships with people who ​understand them
• Gain confidence and independence
• Put aside their troubles, and just be a kid

Power of Two is our peer-to-peer support program that ​connects patients and caregivers living with IBD. Using our ​dynamic new desktop platform and mobile app, you can ​self-match with a trained mentor who knows what you’re ​going through. Power of Two makes it easy to safely share ​your questions, experiences, and challenges with a trusted ​peer who understands.

Power of Two allows mentees and mentors to ​comminicate through:

Questions? Reach out to the Power of Two admin at ​powerof2@crohnscolitisfoundation.org to learn more about our program, ​including alternative ways of participating and how you can become a mentor.

Under the age of 18? Please have your parent or guardian contact the Power of ​Two admin at the above email address.

Our support groups are positive places where ​patients and their loved ones can share their ​stories, seek emotional support, find answers to ​their questions, and connect with a community ​that shares their challenges. We have many ​specialized support groups where you can find ​support for parents and caregivers of patients, j-​pouch and ostomy patients, women, men, and ​more.

What Are Support Groups?

Support groups are safe spaces where patients can share intimate ​details about their IBD journeys. Out of respect for our members and ​volunteers, no outside organization or individual may contact our groups ​looking to promote a product or service, conduct research, recruit for ​clinical trials, observe for educational purposes, or participate in ​interviews.

Virtual Support Groups

Due to COVID-19 in 2020, the Crohn’s & ​Colitis Foundation’s support groups ​stopped meeting or adopted a virtual ​model. When the Foundation lifted its in-​person meeting restrictions in 2022, over ​95% of the support groups stayed ​virtual. Virtual meetings eliminate many ​barriers to participation and allow the ​Foundation to create regional and ​national groups for specific patient ​populations.

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The Crohn's & Colitis Foundation has 34 local chapters across the ​country, hosting a wide variety of events, including educational events, ​support groups, walks, fundraising galas, and more. Chapters also ​develop local relationships with patients, healthcare providers, and ​organizations.

Chapters and support groups work together in several ways. Chapters ​advertise support groups through social media, newsletters, and local ​connections. They provide social and volunteer opportunities and can ​locate guest speakers to present to support groups.

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Since its inception, the Foundation has invested more than half a billion dollars in ​research and the expansion of IBD treatments. The support has been immense ​during this time, primarily driven by our efforts. But we won't stop until we realize ​our vision - a future free from IBD.

We lead the way in new and critically important areas of research, including:

• Basic research, which is aimed at improving scientific understanding and is usually ​done in a lab
• Translational research, which takes lab findings and begins to apply them to the ​development of new treatments, diagnostics, or medical care
• Clinical research, which evaluates how to improve clinical care by studying the ​safety and efficacy of medications, medical devices, and treatment techniques
  

We are at the forefront of bringing together leading scientists in academia, ​pharmaceutical companies, biotech startups, government entities, and any other ​group that has the potential to help us transform what it means to live with IBD and ​ultimately move more patients into disease remission and cures.

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Advocacy is a critical part of our mission to improve the quality of life for ​patients and their families, and to find cures for Crohn’s disease and ulcerative ​colitis.

Our advocates are patients, caregivers, supporters, researchers, and healthcare ​providers. By sharing their stories, they ensure that the voices of those affected ​by IBD are heard.

Access to Care

Reform Step Therapy

Step therapy, also known as fail first, is a practice used by health insurers ​requiring a patient to try and fail on one or more insurer-preferred medications ​before approving coverage for the treatment selected by the patient and their ​provider.

Medical Research

Provide $2 million for the CDC IBD Program in Fiscal Year 2024 (FY24)

The Centers for Disease Control and Prevention (CDC) is studying the impact of ​IBD on minority and underserved populations.

Increase funding for NIH and NIDDK in FY24

Hope for more effective treatments and cures for IBD lies in biomedical research.

Awareness

Increase the Membership of the Congressional Crohn's & Colitis Caucus

The Congressional Crohn's & Colitis Caucus is a bipartisan group of members in ​the U.S. House of Representatives that works together to raise awareness of IBD, ​support IBD medical research, and protect patient access to care.

Support Restroom Access

Many IBD patients worry about whether they will have access to a restroom when ​in public. Patients have been denied access to business restrooms in times of ​emergency, which can lead to unnecessary and avoidable embarrassment.

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IBD 101

As a peer supporter, you will encounter different types of IBD patients with ​different symptoms and complications. You are not expected to be an expert ​(that is what the IBD Help Center is for!), but it will be helpful for you to be ​familiar with terms and conditions members will discuss.

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Crohn’s disease belongs to a group of conditions ​known as inflammatory bowel diseases, or IBD. It ​is named after Dr. Burrill B. Crohn, who first ​described the disease in 1932, along with his ​colleagues, Dr. Leon Ginzburg and Dr. Gordon D. ​Oppenheimer.

• Can affect any part of the GI tract from the ​mouth to the anus but most commonly affects ​the end of the small bowel (ileum) and the ​beginning of the colon
• Can affect the entire thickness of the bowel ​wall
• Inflammation of the intestine can “skip” or ​leave normal areas in between patches of ​diseased intestine

Types of Crohn’s Disease

Ileocolitis:

most common form of Crohn’s disease

Ileitis:

affects only the ileum

Gastroduodenal Crohn's Disease:

affects the stomach and the beginning of the small intestine, called the duodenum

Jejunoileitis:

characterized by patchy areas of inflammation in the upper half of the small ​intestine, called the jejunum

Crohn's (Granulomatous) Colitis:

affects only the colon, also known as the large intestine

Fistulizing:

formation of fistulas (atypical connections between different types of tissues)

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Ulcerative colitis is a chronic disease of the ​large intestine in which the lining of the colon ​becomes inflamed and develops tiny open ​sores or ulcers. This condition is the result of ​your immune system’s overactive response. ​Those ulcers produce pus and mucous, which ​cause abdominal pain and the need to ​frequently empty your colon.

• Only the colon and rectum (also known as ​the large intestine) are affected
• Affects the inner-most lining of the large ​intestine
• Unless it is a proper noun, ulcerative colitis is ​not capitalized

Types of Ulcerative Colitis

Ulcerative Proctitis:

bowel inflammation is limited to the rectum and typically affects less than six ​inches of the rectum.

Left-Sided Colitis:

continuous inflammation begins at the rectum and extends as far into the colon ​as the splenic flexure, which is a bend in the colon near the spleen; also includes ​proctosigmoiditis, which affects the rectum and the lower segment of the colon ​located right above the rectum known as the sigmoid colon.

Extensive Colitis:

affects the entire colon, with continuous inflammation beginning at the rectum ​and extending beyond the splenic flexure.

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Abscess:

collection of pus

Blockage:

when stool is prevented from passing through the body

Bowel Resection:

surgical procedure to remove a portion of the small or large intestine

Colectomy:

surgical removal of the colon

Colorectal cancer:

cancer in the colon or rectum

Dysplasia:

abnormal precancerous tissue

Fibrosis:

scarring or thickening of tissue

Fistula:

tunnel or connection between ulcers that extends the entire thickness of the ​bowel wall

J-pouch:

internal pouch created from the small intestine after proctocolectomy surgery

Ostomy surgery:

allows stool to pass through a surgically created opening in the body

Perforation:

a hole in the wall of the intestine caused by chronic inflammation

Peritonitis:

serious infection resulting from contents of the intestine spilling into the body ​through a perforation

Polyp:

benign, small lump growing on the wall of the intestine

Proctocolectomy:

surgical removal of the colon and rectum

Short Bowel Syndrome:

inability for the body to absorb water and nutrients after sections of the intestine ​have been removed

Stoma:

part of the bowel that pokes out of the abdominal wall

Stricture:

walls of digestive organs thicken or form scar tissue due to chronic inflammation, ​causing a narrowing of the intestine

Toxic Megacolon:

life-threatening severe inflammation

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Medicines that fight bacterial infections

• Cipro
• Flagyl

Synthetic hormone steroids

• Prednisone
• Budesonide
• Uceris

Lab-created antibodies from materials found in life that stop ​certain proteins in the body from causing inflammation

• Humira
• Remicade
• Simponi
• Stelara

Specifically target parts of the immune system that affect ​inflammation

• JAK Inhibitors
• Xeljanz
• Rinvoq
• S1P Receptor Modulator
• Zeposia

Modify activity of the immune system

• Imuran
  
• Methotrexate
  
• Prograf
  

Reduce inflammation in the lining of the intestine

• Asacol
  
• Canasa
  

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Developing & Cultivating A Chapter ​Relationship

Chapters connect support programs to the local IBD ​community; patients, caregivers, and healthcare professionals

Chapters have connections with the local IBD community. They offer ​opportunities to meet patients, caregivers, and healthcare providers ​through in-person education and fundraising events, volunteer ​opportunities, and chapter initiative meetings.

Your local chapter is an excellent resource for promoting the support ​programs and making deeper connections with the Crohn‘s & Colitis ​Foundation.

• Developing and cultivating a chapter relationship starts with you. The ​chapter will receive an email with your contact information and ​marketing material when the group is ready to start meeting. This is your ​chance to introduce yourself. Tell the chapter about yourself and the ​group.
  

If the support program is involved, your support lead (Elizabeth / Cat) ​must be included in all communication between you and the chapter.

For us to effectively run thee programs, we must know what is going on. ​Please cc us in all emails; I read them and comment when needed.

eyeackle@crohnscolitisfoundation.org

powerof2@crohnscolitisfoundation.org

If the chapter reaches out to you regarding the support program and we ​are not included, please cc us in the email.

You don't need to let me know if it doesn't include a support program

Chapters connect support programs to the local IBD community:

patients, caregivers, and healthcare professionals

Executive Director

The Executive Director is the Foundation staff member responsible for ​chapter activities and initiatives. The Executive Director develops ​relationships with local healthcare professionals, organizations, and ​donors and works directly with national teams.

Take Steps and Special Event Managers

Foundation staff members who manage chapter events, work with ​volunteers, and fundraise to reach chapter goals and initiatives.

Chapter Board of Directors

Board members are volunteers who work in three-year terms to manage ​the chapter, fundraise, develop relationships, and guide chapter ​decisions.

HPEC (Healthcare Professional Engagement Committee)

Members of the HPEC work with chapters to better connect and grow ​the local IBD community through advocacy, education, support, ​fundraising, and awareness building efforts.

Ways to connect with the chapter

Volunteer at Take Steps

• Take Steps is an annual fundraising walk event that brings communities ​together in a fun, family-friendly, supportive atmosphere that lets ​patients know they’re not alone. Chapters are always looking for ​volunteers to help on walk day. Sign up to work a booth or a table. This ​allows you to meet patients and caregivers, talk to them about support ​programs, and provide them with contact information. Every chapter ​holds a Take Steps event; most chapters have several.
  

Volunteer at education and fundraising events

Every chapter holds events throughout the year. Contact the chapter ​and see what opportunities they have coming up. Do not forget to cc me ​in the email.

Check the chapter’s webpage

• The chapter will post events and news on their webpage. Occasionally, ​check the site and see what is happening.
  

Present to Boards and HPECs

Chapter boards and HPECs meet regularly. Ask me, and I will contact ​with the chapter to see where opportunities exist to present aat the ​board, HPEC, or other chapter events.

Sign up for the chapter newsletter

The chapter sends a monthly newsletter full of information from the ​chapter and the Foundation. Sign up on the chapter’s webpage. Ask us ​to connect with the chapter to feature patient stories and support ​program activities.

Follow the chapter on social media

• Chapters have Facebook, Instagram, and Snapchat accounts. Search for ​them on your favorite social media app or sign up through their ​webpage.
  

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Credible vs. Non Credible Info

A credible source of information is written by an expert or professional in their field, is unbiased, free from errors, and can be backed by research or evidence.

Groups formed to improve the lives of patients affected by certain health conditions. They raise awareness, fund research, provide support, and offer education.

Examples: Crohn’s & Colitis Foundation, The American Heart Association, Celiac Disease Foundation, United Ostomy Association, American Cancer Society, American College of Gastroenterology

Major hospitals, research centers, government institutions, and professional journals are examples of prominent health organizations.

Examples: The Center for Disease Control and Prevention, The Mayo Clinic, Medline Plus, The Journal of the American Medical Association, Johns Hopkins

US government institutions, nonprofit organizations, and schools and higher learning institutions

.gov- reliable unless the site is political in nature

.org- do your due diligence; these sites can be biased

.edu- reliable but check for bias

Buzz Words & Signs That Info May be Non-Credible

1-888-MY GUT PAIN

(888-694-8872)

info@crohnscolitisfoundation.org