In this issue...
Our new progress tracker shows milestones patients can feel.
Reduced ER visits and hospital stays: The Urgent Care Toolkit is changing daily life for patients.
Insights into perianal Crohn’s uncover immune triggers, paving the way for targeted therapies.
Breakthrough trials offer hope for safer, more effective treatments.
Featuredstory
Tracking Our Progress
New Public Metrics Page shows how research, support, and advocacy are advancing for people with IBD
The Crohn’s & Colitis Foundation has set bold goals in its 2025–2028 Strategic Plan: to accelerate research, expand education, improve patient support, grow volunteer engagement, and break down barriers to care. Now, we’re making it easier than ever for the IBD community to follow our progress.
A Transparent Look at Progress
This year, the Foundation launched a new Public Metrics page to openly share key milestones with patients, caregivers, and supporters. Updated twice a year, the page highlights advances across six areas: research and clinical innovation, education, support, revenue and volunteers, advocacy and access, and engagement and awareness.
“By making our progress public, we’re holding ourselves accountable and keeping the community informed,” said John Capodilupo, strategic oversight committee chair.
Milestones That Matter
Already, this transparency shows how far we’ve come. The Foundation is making strides in funding research focused on the prevention of inflammatory bowel disease (IBD), growing our advocacy base, and increasing awareness of the realities of living with IBD.
“For people living with IBD, the page is a window into the tangible steps being taken toward better treatments, greater access, and ultimately, cures,” says Orna Ehrlich, chief of staff and impact. “It’s about showing progress that matters…progress they can feel.”
ResearchUpdate
Urgent Care Toolkit Reduces Crises, Raises Confidence
Evidence-based care that keeps IBD patients healthier, safer, and out of the hospital.
A trip to the emergency room can be stressful, costly, and disruptive for people living with Crohn’s disease or ulcerative colitis.
Since the Crohn’s & Colitis Foundation introduced its Urgent Care Toolkit three years ago, participating gastroenterology centers have seen a 51% reduction in emergency department visits and a 57% reduction in hospitalizations. For people living with Crohn’s disease or ulcerative colitis, these improvements translate to better health outcomes and greater confidence in their care.
These reductions are derived from evidence-based best practices identified by gastroenterology centers that participate in IBD Qorus, our nationwide network of care centers that collaborate to improve the standards of care for people living with IBD. As Alandra Weaver, vice president of Clinical Quality and Research Innovation, explains, “IBD Qorus is like a think tank of physicians sharing and learning best practices from one another. When you get great minds together, it drives innovation.”
The Toolkit emphasizes four simple practices: identifying high-risk patients; offering support such as weekly nurse check-ins; reserving urgent-care appointment slots; and providing clear guidance on when to visit the ER. “By identifying high-risk patients, keeping a closer eye on them, and giving them quick and easy access to gastroenterology appointments when needed, healthcare providers can keep IBD flares from turning into emergencies,” says James Testaverde, MPA, associate vice president, IBD Qorus Implementation.
Together, these strategies have reduced emergency visits, lowered opioid use, and saved the healthcare system an average of $2,500 per patient each year.
VOICES OF IBD
During a flare, every hour is critical. Mine often ended in the ER. Now, fast care and proactive check-ins catch issues early, bringing immense relief and making IBD less daunting.
— Sam Albert, IBD Qorus Patient Advisory Committee member, on the benefits of the Urgent Care Toolkit
Shedding Light on Perianal Crohn's Disease
Foundation’s research accelerator tool opens new doors to treatments
IBD Plexus®, our research accelerator, houses the world’s most comprehensive collection of IBD patient data and biosamples.
A study published in The Journal of Clinical Investigation used patient samples from IBD Plexus® to study perianal Crohn’s disease (PCD), a painful and difficult complication of Crohn’s that affects up to 40 percent of patients. PCD causes tunnels, called fistulas, to form between the intestine and surrounding tissue, and is often resistant to current treatments.
Researchers examined tissue samples from patients with PCD, along with comparison groups of patients without perianal disease and people with non-IBD fistulas. They found that a specific immune signal—interferon gamma (IFN-γ)—was highly active in patients with PCD. This over-activation was linked to inflammation and changes in tissue that allow fistulas to form and persist.
To validate these findings, the team analyzed data and biosamples from a separate group of patients who participated in the SPARC IBD study within IBD Plexus, which confirmed the same pattern.
The study also identified high numbers of Th17 immune cells, a type of white blood cell. Normally, Th17 cells help protect the body from infections. In PCD, however, these cells produced large amounts of IFN-γ, fueling inflammation and tissue damage. Together with other immune cells, they created a cycle that drives fistula formation.
“These findings highlight IBD Plexus’ unique ability to connect researchers with the right data and biosamples, empowering them to accelerate discovery and open new possibilities for care,” says Angela Dobes, senior vice president of IBD Plexus.
Shaping the Future of IBD
Foundation-Supported Research Advances to Clinical Trials
IBD Ventures is the Foundation’s venture philanthropy program that drives the development of novel products for people with IBD by funding early-stage companies and academic teams across the globe. These companies receive funding, expert advice, and unrivaled access to critical research infrastructure, which helps transform promising ideas into real-world solutions.
Currently, there are eight IBD Ventures research studies in clinical trials. Below are three that could bring patients new treatments that target inflammation, fibrosis, and the gut's intestinal wall.
Targeting Inflammation With A Fat Molecule
A first-of-its-kind oral lipid compound has been designed to reduce inflammation and promote gut wall healing in people with IBD, without suppressing the immune system. Unlike traditional immunosuppressants, this compound (TP317) uses Resolvin E1 (an anti-inflammatory fat molecule derived from an Omega-3 fatty acid) to decrease inflammation and support intestinal mucosal healing. Now a Phase 1b trial in Australia through Thetis Pharmaceuticals, this approach could offer a safer, more targeted option for patients seeking long-term relief, especially people who can’t tolerate or don’t respond well to current therapies. IBD Ventures helped move TP317 from preclinical development toward the clinic.
Gut-Targeted Drug Delivery To Decrease Fibrosis and Inflammation
A new oral drug (PALI-2108) has the potential to reduce gut fibrosis in Crohn’s disease and inflammation in ulcerative colitis patients.
Unlike traditional medications, this treatment (PALI-2108) is designed to deliver its effects mainly in the last part of the small intestine and the colon. This targeted approach aims to reduce gut scarring (fibrosis) and inflammation, but with fewer side effects, such as nausea, that often come with similar drugs. By delivering the drug directly on the affected areas in the gut and limiting how much of it enters the rest of the body, PALI-2108 could offer a safer and more tolerable way to manage Crohn’s and colitis. IBD Ventures supported its preclinical development at Giiant Pharma, subsequently acquired by Palisades Bio, to bring this compound to the clinic. Following positive safety data reported in a Phase Ia study and a Phase Ib in ulcerative colitis, a Phase Ib is now underway for fibrostenosing Crohn’s disease.
Oral UC Treatment Protects Intestinal Barrier
A new drug being developed for ulcerative colitis patients aims to strengthen and heal the gut lining and reduce inflammation by supporting immune health. The drug (MB310) contains a mix of eight carefully chosen beneficial gut bacteria, discovered by studying patients who improved after a stool transplant. Unlike some other treatments, MG310 doesn’t suppress the immune system. Researchers at Microbiotica are testing the drug in a clinical trial to see if it’s safe and effective. They expect results by the end of 2025.
The Foundation is proud to be instrumental in moving these discoveries from the lab to trials, where they can begin making a real difference for people affected by IBD. To explore additional studies and opportunities, visit our Clinical Trials Community page.
Preventing IBD Before it Starts
What if Crohn’s disease or ulcerative colitis could be predicted (or even prevented) before symptoms appear?
The Crohn’s & Colitis Foundation has made prevention a top priority in our new research agenda. From cutting-edge blood and stool tests to AI-powered risk models, environmental tracking, and wearable biosensors, we are funding innovations designed to identify IBD at its earliest stages.
This groundbreaking work was recently featured in HealthCentral and a special edition of Inflammatory Bowel Diseases. As rates of Crohn’s and colitis continue to rise among children and adults, “prediction and prevention of the worst outcomes for at-risk individuals may be just as important as treating people living with IBD,” says Alan Moss, M.D., our chief scientific officer.
Science At Your Fingertips is One Flip Away
Get ready to flip through discovery! The Foundation’s Under the Microscope (our twice-yearly publication filled with the latest breakthroughs, in-depth studies, and inspiring stories) is now online in an interactive, flip-book format. This new resource makes learning about IBD research fun, approachable, and accessible anytime, anywhere, for patients, families, caregivers, and anyone curious about IBD.
PatientSupport
Yes, You Can Eat Out with IBD
New video shares expert swaps and strategies to ease the worry and increase the fun
Can people living with IBD enjoy a restaurant meal if they have Crohn’s disease or ulcerative colitis? In this Foundation video, two experts—Rachel Dyckman, RD, and gastroenterologist Stephanie Gold, MD—share practical tips for dining out with confidence while managing IBD.
With a little planning and self-advocacy, they empower people with IBD to enjoy being social, not stressful, so that eating out can be less about worry and more about sharing a meal with the people they love.
Advocates Bring Safe Step Act Back to Capitol Hill
Sixty-two volunteers, eighty-one meetings, one powerful day.
On Sept. 18, volunteer advocates returned to Capitol Hill to champion critical priorities: boosting research funding and reforming step therapy. The Crohn’s & Colitis Foundation’s Day on the Hill brought 62 volunteer advocates from 23 states to Washington, D.C., where they held 81 meetings with lawmakers and staff.
“The energy and courage our volunteers brought to Capitol Hill was inspirational,” says Jason Levine, the Foundation’s vice president of Advocacy, and the impact was immediate. “As a direct result of IBD Day on the Hill, the Safe Step Act was reintroduced in both the House and Senate,” Levine explains. The bill would reform step therapy nationwide so patients can receive the medication their doctors prescribe, rather than being forced to “fail first” on insurer-mandated treatments.
For many advocates—patients, caregivers, and healthcare professionals—the day marked the first time they had shared their IBD stories in a public setting. Levine describes the experience as “exhilarating and impactful,” noting the power of watching volunteers connect personally with members of Congress and their staff. Their physical presence underscored how IBD policy decisions affect real lives and real families.
“By putting a human face to inflammatory bowel disease,” Levine says, “our volunteers help lawmakers understand the urgency of advancing policies that improve access to care, accelerate research, and reduce the burden of chronic illness.” Just as important, participants left empowered, knowing their voices matter and that together, they are driving change.
Turning IBD Challenges Into Change at Day on the Hill
With courage and conviction, patients and caregivers met with lawmakers, transforming personal struggles into collective advocacy, and inspiring hope that will shape the future of IBD care.
VOICES OF IBD
“IBD often takes its own course; advocacy gives us power.”
IBD caregiver and advocate Stephanie Osorio of New Jersey joined the Foundation’s 2025 Day on the Hill with her 13-year-old son, Aidan. “As a parent, supporting this cause is personal because of my son’s journey with IBD,” she says. “Watching him speak directly to lawmakers about the realities of this disease was profoundly moving. Taking part in an event that pushes for meaningful change, like the Safe Step Act, was empowering for both of us.”
Celebrating Camp Oasis’ Biggest Year Yet
For kids with IBD, Camp Oasis is where friendships and confidence take root. This summer, it welcomed 1,035 kids in 2025 (an 8% jump) with 880 attending in-person across 10 residential sessions and 155 virtually. “We were thrilled to serve so many campers in our 20th anniversary year,” says director Lori Butterfield, director of Camp Oasis. “It’s exciting that more healthcare providers are urging children with IBD to join this fun and supportive experience.” While every location offers something different, increased post-pandemic interest and growing provider support contributed to strong attendance. Says Lori: “First-timers say they finally found a place where they belong.”
IBDAWARENESS
Let's Go There
Breaking the silence around IBD and mental health
For Gaylyn Henderson, sharing her story means shining a light on the often-overlooked connection between IBD and mental health, especially in the Black community. In a video created for our Let’s Go There campaign, she reminds us that people living with inflammatory bowel disease experience higher rates of mental health challenges, yet conversations about it remain far too rare.
“Why don’t we talk about it?” she asks. “Mental health disorders, much like IBD, aren’t always visible. But that doesn’t make IBD any less real.”
Henderson notes that stigma, lack of awareness, and systemic and cultural barriers—particularly within the African American/Black community—all contribute to the silence, emphasizing that there is no benefit to struggling alone. “I’ve learned—and I’m learning—there is no reward for struggling through mental illness without seeking the help you need.”
Gaylyn's message? When we share our stories, we build bridges of connection...making community more vital than ever.
Do You Know Our Impact?
With gratitude to all of our supporters!
Many wonderful 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.
Financials
The money the Foundation spends goes toward research, education, and support services.
Download a Print Version of the Impact Report