Our Impact
$36million
Amount we invested in research in 2022
12,000
Inquiries addressed by our IBD Help Center each year
98%
of campers and parents said that Camp Oasis was a place where kids with IBD felt like they belonged.
5years
Duration of new CDC-funded grant for Foundation and the University of Alabama to address barriers to IBD care in Black/African Americans
3million
Patient and professional connections made through our education, support, and advocacy programs
2,500
Number of research projects we've funded to date
A Message from our Leadership
Engagement with the Crohn’s & Colitis Foundation has a positive impact on their disease journey say 85% of patients recently surveyed. Take a look at our latest Impact Report to learn more about how we are creating a new future for people who live with inflammatory bowel disease (IBD).
Highlights of our recent progress include:
- Making inroads in research to block inflammation and heal the intestine.
- Bringing recipes from our Gut-Friendly Recipe Finder to patients through online cooking classes.
- Helping patients learn about the new biosimilar medications available in 2023.
- Publishing a study on the life-changing impact of Camp Oasis, our sleepaway camp for kids with IBD.
Thanks to your support, we are a driving force in the development and delivery of next generation treatments for IBD. Remember, whether you’ve just been diagnosed or have been living with IBD for a while – you are not alone. We are here to be your trusted source for information and guidance every step of the way.
With warm regards,
Michael Osso
President & CEO
Brent Polk
Chair, Board of Trustees
What Patients Say
“Camp Oasis was the best experience I’ve ever had. I’ve made lifelong friends. I’ve grown much more comfortable talking about my Crohn’s. It was a week to feel like a normal kid. It went past my imagination. It’s my home away from home.”
“I didn’t know that clinical trials for Crohn’s disease existed until I became involved with the Foundation. I’ve been in a clinical trial since February 2023 and it is going well.”
“I went to a Foundation support group after I was diagnosed with Crohn’s and it was fantastic. I made friends, heard stories and shared information. I now run three support groups. It’s empowering for me and everyone who attends.”
“The Foundation has given me a voice in research. As a patient reviewer for research grants, I review research proposals and the impact they will have on patients. There are so many more treatment options since I was diagnosed with Crohn’s disease 15 years ago.”
Pushing Boundaries in IBD
Now in its sixth year, IBD Ventures has invested millions of dollars into promising treatments, diagnostics, and medical devices for IBD. In 2023, we funded several new projects that aim to transform the way IBD and related complications are managed.
A new way to fight inflammation
Inotrem, a French biotech, has identified a novel drug target called TREM-1. “It’s a protein that’s over-expressed in people with active disease,” says Andrés Hurtado-Lorenzo, PhD, Senior Vice President, Translational Research and IBD Ventures. “The company is developing a neutralizing antibody that can decrease inflammation by reducing levels of TREM-1 in people with IBD.”
IBD Ventures’ investment in this project will enable Inotrem to gather the data required to move the antibody on to clinical trials in humans. At the same time, Inotrem is using samples from the Foundation’s massive IBD Plexus® biobank to develop a companion diagnostic tool, which will enable clinicians to identify the patients who are most apt to respond to this treatment.
Healing the intestinal wall
A healthy gut wall (also called the intestinal barrier or mucosa) is key to preventing damaging bacteria in the intestinal tract from reaching the intestinal tissue and bloodstream. Yet in people with active IBD, this barrier is compromised because it is injured and inflamed. A South Korean company has found a unique way to restore it.
Scientists at Nano Intelligent Biomedical Engineering Corporation (NIBEC) are focusing on integrin beta-1, a receptor on the surface of the cells lining the gut wall. They have developed a small protein fragment, known as a peptide, that binds to this receptor and prompts healthy cells to move to the injured site. “The new cells migrate to the site of injury and seal wounds,” says Hurtado-Lorenzo. “That’s how you heal the mucosa.”
NIBEC already has an intravenous formula of this peptide-based drug that is effective in animal models. Thanks to the investment from IBD Ventures, the company is now developing an oral formulation of this peptide that’s suitable for humans, as well as collecting preclinical data that will be needed to move the product to clinical trials.
Treating fibrosis without surgery
Fibrosis, or the buildup of scar tissue that may lead to narrowing and obstruction of the intestines, is a common IBD complication that often calls for surgery. “Right now, the only treatment for fibrosis is surgery,” says Hurtado-Lorenzo. A Spanish company, Medibiofarma, is developing a first-in-class oral therapy to treat this problem.
The Medibiofarma drug targets PPAR-gamma, a protein that plays a role in inflammation as well as fibrosis. There’s already a diabetes drug on the market that suppresses PPAR-gamma, but it’s not widely used because it decreases PPAR-gamma biological functions so much that it causes numerous side effects. Medibiofarma is developing a compound that only partially reduces the action of PPAR-gamma—enough to treat inflammation and fibrosis in people with IBD, but not so much that it causes serious side effects.
Support from IBD Ventures is making it possible for Medibiofarma to conduct pharmacology studies in preparation for clinical trials.
Projects funded by IBD Ventures have the potential to transform diagnostics and treatments.
$2.4 million
Amount invested by IBD Ventures to support the development of novel products to address the unmet needs of patients.
A new drug candidate could decrease intestinal inflammation.
I would not have been able to develop this drug without the support of IBD Ventures.
Scientist Spotlight: Dr. Barbara Slusher
Barbara Slusher, PhD, director of Johns Hopkins Drug Discovery Program, has been studying an enzyme called GCPII for more than 25 years. Early on, she focused on the role of this enzyme in the brain, but she soon discovered that GCPII also plays an important role in digestive disorders. Thanks, in part, to funding from the Crohn’s & Colitis Foundation, much of her work now centers on IBD.
In recent years, Dr. Slusher developed a new oral drug candidate that decreases intestinal inflammation and restores a leaky gut barrier by blocking the function of GCPII. She also discovered that GCPII is elevated in IBD patients with chronic pain that persists after inflammation has subsided. She is now working toward moving this drug into clinical trials.
Creating a New Research Road Map
In September, the Foundation brought together IBD researchers, clinicians, industry leaders and patients to share current Foundation-supported research on IBD and provide input into our research funding priorities for the next five years.
Our five-year research agenda is titled “Challenges in IBD Research” because our funding goals are driven by identifying unmet patient needs that present opportunities for future research and/or funding.
Patient input is key to the development of our research agenda. Our patient-review process helps us ensure that the most promising and relevant projects and grant applications are funded. Patients serve on our Challenges in IBD workgroups and use their experience to tell us what research means to those living with IBD.
Researchers and patients discussed research gaps focusing on how to arrest or prevent the disease prior to symptoms, restore the patients’ function once the disease is diagnosed, and prevent disease recurrence and progression.
“It’s fascinating to be with so many researchers in one room working on this disease and approaching it in different ways,” says patient Denise Elsbree, whose mother, two brothers, and two daughters also have IBD. “I’m putting a face on what you are working on and how it impacts me and my family,” she told everyone.
The Foundation’s new Challenges in IBD Research will be published in mid-2024. Learn more about Challenges in Research here.
Discussions between researchers and patients help ensure the most relevant projects are funded.
New research aims to overcome the challenges Black/African American IBD patients face.
Breaking Down Barriers
Black/African Americans patients typically suffer higher rates of hospitalization and surgery from IBD, due to delayed diagnoses, limited access to care in more rural areas, and other social determinants of health that can include educational and economic factors. To address this problem, the Foundation is partnering with the University of Alabama (UAB) on research that aims to identify and understand these barriers and design programs to improve access to healthcare for Black/African American IBD patients in Birmingham, Alabama.
Working in partnership
This research is being funded by a five-year grant from the Centers for Disease Control and Prevention (CDC). The Foundation will use the research conducted by UAB to work with community partners to raise awareness of IBD, promote earlier diagnosis, and ensure that resources are available to help patients access the care they need.
“Approaching IBD education with community partners will empower patients and remove obstacles to care,” says Laura Wingate, Executive Vice President, Education, Support, and Advocacy for the Crohn’s & Colitis Foundation. Jennifer Pollock, PhD, and Daniel Chu, MD, of the University of Alabama will serve as principal co-investigators, along with Wingate on behalf of the Foundation.
The eventual goal is to disseminate findings and share best practices so we can replicate this all over the country.
Building Confidence in Biosimilars
Biosimilars, which are nearly identical versions of brand-name biologics, are taking the market by storm. Biosimilars are just as safe and effective as the original biologics, and biosimilars have the potential to drive down overall drug prices, says Laura Wingate, Executive Vice President, Education, Support, and Advocacy for the Crohn’s & Colitis Foundation.
Overcoming patient fears
The catch is that many patients aren’t convinced that biosimilars are as good as the biologics they’re used to taking. A recent survey conducted by the Crohn’s & Colitis Foundation found that almost 50% of IBD patients currently on biologics feel concerned about switching to biosimilars. Such qualms may lead to a “nocebo” effect; in this case, this means that patients who expect a biosimilar to be problematic are more likely to experience side effects or not respond to the therapy, Wingate explains.
“We want patients and caregivers to understand that the way biosimilars work and the components that make them effective are the same as the biologics they know,” says Wingate.
“We also encourage patients to talk to their doctor if they have any concerns. An educated patient is more open to accept a biosimilar and not experience a nocebo effect.”
To counter these fears and reassure patients, the Foundation has developed a number of patient resources, including these videos:
What is a Biosimilar?
Safety & Efficacy
Research shows biosimilars are safe and effective for adult and pediatric IBD patients.
Every biosimilar is thoroughly approved and tested by the FDA. This means that biosimilars are just as safe and effective as biologics you may already take.
More than 700 kids and teens attended Camp Oasis this summer.
Changing Lives for Kids with IBD
This summer, 760 kids attended our week-long sleepaway camp – Camp Oasis – an increase of 32% from 2022. An additional 183 campers participated in our virtual CampOasis@Home.
What’s more, the overwhelming majority of summer 2023 campers and parents surveyed agreed that Camp Oasis gave kids a sense of belonging (98%) and that campers opened up about their experiences with inflammatory bowel disease (IBD) (91%).
Another recent Foundation study also confirmed the life-changing impact Camp Oasis has on campers’ social-emotional well-being and feelings of self-worth. This study reviewed over a seven year period surveying more than 6,000 campers and their caregivers’ perceptions before and after attending camp. Campers experienced notable improvements in their confidence, sense of independence, and being more open about their disease.
“While campers and parents repeatedly tell us about the impact of Camp Oasis on their lives, these studies verify the critical role that our camp plays in improving kids’ quality of life,” says Lori Butterfield, Director, Camp Oasis. “At camp, they don’t have to explain themselves; nobody looks at them differently if they have to use the restroom multiple times during dinner. They can just focus on being kids, making friends, and having fun.”
The Foundation has long provided camp scholarships to those who qualify, but as of last year we’ve also been able to offer travel stipends to help make camp more accessible for everyone who wants to participate.
I’ve watched my son struggle so much this year; he was feeling defeated and frustrated by his symptoms. I can’t begin to put into words how much of a positive impact camp had on him. Thank you for giving these kids a chance to thrive.
Gut Friendly Recipes Come to Life
In early 2023, we were thrilled to launch Gut Friendly Recipes, an online tool containing more than 500 recipes suitable for people with IBD
and other digestive disorders. It quickly became one of our most popular online resources. Since August, we’ve been bringing some of these recipes to life with the help of Joel Gamoran, a professional chef, media personality, and ulcerative colitis patient.
Through a partnership with the Foundation, Chef Joel has been teaching viewers how to prepare a select number of healthy and delicious Gut Friendly Recipes during 45-minute live Zoom classes. These interactive cooking demos, which are running once a month through January, are free and hosted on Chef Joel’s Homemade website. Viewers who miss the livestreams (taking place on November 28, December 21, and January 23) can catch the recorded demos on our website or YouTube channel.
Joel Gamoran, a professional chef, media personality, and ulcerative colitis patient.
Supporting Legislation That Protects Patients
On September 19th, more than 150 patients and supporters participated in Day on the Hill, during which they met with their representatives and voiced their support for step therapy reform. This followed Foundation advocacy events that took place earlier this year, including the Day of Action in April.
Step therapy, also called “fail first,” refers to common insurance protocols that require patients to try and fail a cheaper medication before they’re willing to cover the treatment that the patient and provider believes will help them the most. This jeopardizes patient health, as it delays access to the best-available care.
Our patient advocates have been working to get step therapy reform enacted for many years, and we’ve been successful in reaching that goal in many states. But these state laws don’t apply to the majority of insurers, which means many patients aren’t covered by them, says Erin McKeon, Associate Director, Federal Advocacy, for the Crohn’s & Colitis Foundation. That’s why getting federal legislation in the form of the Safe Step Act is so critical.
Changes could come soon
Currently, pharmacy benefit management reform bills—which focus on how drug prices are negotiated by pharmaceutical manufacturers and insurance companies—are being debated in both the House and the Senate, and there’s an opportunity for the bipartisan Safe Step Act to be rolled in.
“The Safe Step Act has been circulating for seven years; this is the best opportunity we’ve had since it was introduced to actually get it passed into law,” says McKeon. “Everyone can be an advocate in some capacity,”. Learn how you can help by visiting our online Action Center.
Patient advocates really make a difference. It’s important to keep telling their stories.
150 advocates participated in our virtual IBD Day on the Hill.
YOUR SUPPORT MATTERS
All year, you participate in our community events and encourage us with your stories of hope and resilience. You inspire us with your commitment to raising funds that support IBD research, awareness, and initiatives designed to make the lives of people with IBD better. We invite you to continue your efforts and find your community of support through local events like our galas, Take Steps, Team Challenge, spin4 crohn’s & colitis cures, and more.
2022 Financials
Approximately 80 cents of every dollar the Crohn’s & Colitis Foundation spends goes to research, education, awareness building, and support services. “We are proud to be able to allocate such a large percentage of every dollar raised to advancing this critical mission and making life better for IBD patients across the country,” said Michael Osso, president & CEO.
2022 Supporters
The following individuals and foundations have made important and significant contributions to the Crohn’s & Colitis Foundation in support of our mission programs. We are deeply grateful to them for their extraordinarily generous gifts.
View our Past Impact & Annual Reports
Read about the advances the Foundation has made in research, patient education support, and advocacy.
Your support inspires our commitment to create a new future for people living with IBD.