In this issue...
How we’re helping people with IBD feel less alone
Five studies bringing earlier detection and better IBD care closer
Camp, expert help, and advocacy help clear the path to care
Brave voices and 21,000+ participants bringing IBD into view
Featuredstory
You Are Not Alone: Confronting the Stigma of IBD
Living with Crohn’s disease or ulcerative colitis is challenging enough; talking about it shouldn't be — yet stigma often makes it so. Because symptoms are hard to discuss, many people feel embarrassed and ashamed, which can lead to silence and isolation from the very support that could help them cope. That stigma can carry harmful consequences: People with IBD face significantly higher risks of anxiety and depression than their peers.
The Crohn's & Colitis Foundation is breaking that stigma through programs that help people feel less embarrassed, more open, and less alone.
Camp Oasis
At the Foundation's in-person and virtual summer camp for kids and teens with IBD, embarrassment gives way to belonging. Data from 2025's post-session survey releaved that campers were 48% less likely to feel embarrassed about having IBD...but it's their actual words that can say it better than any statistic.
"Before Camp Oasis I would never have done most of the things I did there," one camper shared. "I met new people, which has always been nerve-wracking, and I became more confident in myself with my IBD."
Support Groups
Across the country, more than 100 Foundation-backed support groups reflect the diversity of the IBD community. From adults to kids, caregivers to Spanish speakers, gender-specific to identity-based groups, and from people with ostomies to j-pouches, everyone has a place to feel seen and supported. It shows in the numbers: as a result of attending the support group, 90% of participants say they feel less embarrassed about having IBD, and 96% talk more often with family and friends about it.
'Let's Go There' Awareness Building
Since 2024, this Foundation-launched social media campaign has sparked vulnerable conversations challenging the stigma surrounding IBD, starting from a simple truth: IBD can be uncomfortable to talk about, but not as uncomfortable as it is to live with. Among people who had seen the campaign, a 2025 survey found that more than half felt less embarrassed about having IBD as a result of the campaign, and half reported being more open about their experiences.
ResearchUpdate
What's Really Driving IBD? A New Map Looks Cell by Cell.
Tracing IBD risk to specific cell types
No two people's IBD looks quite the same, and a treatment that helps one person may do little for the next. New Foundation-supported research is beginning to explain why, by studying the disease one cell at a time.
In a study published in Nature Genetics, researchers analyzed more than a million individual cells and built one of the most detailed maps of the Crohn's gut to date. The findings challenge a common assumption: genes may help shape a person’s risk of developing IBD, but they do not tell the whole story. “We're trying to move people away from thinking about IBD as just a genetic disease," says Alan Moss, M.D., the Foundation's chief scientific officer. "Genetics underpins some of the reasons why you're predisposed. But many people with abnormal genes never get IBD, and most people with IBD do not have known genetic abnormalities."
What the map shows instead is which cells are misbehaving: the immune cells that drive inflammation, and the cells meant to repair the gut lining, but keep signaling trouble even when the gut appears to be healing.
That distinction matters for treatment. “Most of our treatments affect most immune cells," says Moss, “so this might give you an opportunity to target individual types of immune cells and their pathways." For patients, that points toward more precise, personalized care: therapies aimed at the specific cells driving disease, and more specialized use of the treatments that already exist.
Years Before Symptoms, the Immune System Knows
Study encourages reading the body's earliest signals of IBD
Long before the first symptoms of Crohn's disease or ulcerative colitis appear, the immune system may already be changing. For families where IBD runs close, that could one day mean knowing years sooner.
In a Foundation-supported study published in Gut researchers at Mount Sinai and the Medical University of Vienna analyzed nearly 2,000 blood samples collected up to 10 years before diagnosis and, in some cases, found warning signs that early.
The two diseases signaled themselves differently. In people who went on to develop Crohn's, the team saw elevated antibodies against Epstein-Barr virus and against proteins from gut bacteria, up to a decade in advance. In ulcerative colitis, a broader mix of microbial, viral, and autoimmune changes appeared closer to the time of diagnosis.
The Foundation sees this as an important step toward its prevention research agenda. Next, researchers will need to confirm the findings in larger, more diverse groups of people. The long-term goal is to turn this knowledge into a simple test that could help identify who may be at risk before IBD develops.
Crohn's Changes Over Time (And So Might Its Treatment)
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 Crohn’s & Colitis used patient gut tissue samples from IBD Plexus to understand how IBD changes over time.
In Crohn’s disease, the length of time a person has had the disease strongly affects how genes in the gut behave. Research shows that as Crohn’s progresses, key biological pathways shift, which helps explain why long-standing Crohn’s disease is often harder to treat and can lead to lower response rates to medications like infliximab.
In contrast, ulcerative colitis does not show the same pattern. Gene activity in these patients remains relatively stable over time, meaning disease duration plays a much smaller role in altering their gut gene profile.
These findings suggest that Crohn’s disease may require different treatment approaches depending on how long a person has been living with it. The results could help researchers develop better biomarkers and more personalized treatment strategies for both Crohn’s disease and ulcerative colitis.
For Some With Crohn's, Meal Timing May Be a New Treatment Tool
Managing Crohn's usually means watching what you eat. New Foundation-funded research suggests when you eat may count, too. In a small randomized clinical trial, adults who have Crohn's and who are overweight or have obesity limited their meals to an eight-hour daily window (a form of time-restricted eating called intermittent fasting). Within 12 weeks, stool frequency fell 40% and abdominal discomfort was cut in half, with improvements in inflammation-linked blood markers, as well. While the results are early (and while intermittent fasting is not a replacement for treatment), for this group, meal timing offers a rare, within-reach step people can explore with their care team.
Could a Daily Pill Help Crohn's Remission Last?
For people living with Crohn's disease, reaching remission is a relief, and maintaining it is a quiet, constant worry. A Foundation-backed study is testing whether a daily probiotic pill could help.
The treatment, called EXL01, is built from Faecalibacterium prausnitzii, a beneficial gut bacterium that's often in short supply in people with Crohn's. In an early human trial published in Nature Communications, adults who had reached remission after steroid treatment took EXL01 once a day. The treatment was well-tolerated, with no treatment-related side effects, and researchers saw measurable shifts in immune activity along the gut lining…signs that the approach may do what it's designed to do.
While it's very early (the study was small, and larger, controlled trials are needed before anyone knows whether EXL01 can truly help people hold onto remission), the results point to a hopeful idea: that one day, protecting remission could be as simple as a daily pill.
PatientSupport
Inside the IBD Help Center: Real Support for the Realities of IBD
When a parent called the IBD Help Center, she was looking for medical advice for her daughter who had survived Stage 4 cancer and was about to begin treatment for IBD. She feared it might bring the cancer back. A specialist found supporting research, translated it into plain language, and stayed on the phone until the mom’s fear subsided.
That's the work behind these statistics. In 2025, the Foundation's IBD Help Center’s master’s degree-level specialists made nearly 12,000 connections with the IBD community on topics ranging from disease information and IBD treatments to financial strains, housing, and coping with IBD. Of those recently surveyed, 86% were highly satisfied, and eight out of ten would recommend it to someone with Crohn's disease or ulcerative colitis.
"We consider ourselves one of the many essential tools in a patient's support toolbox," says Ayesha Williams, MPA, senior director, Education & Support. "More than anything, we want to provide that compassionate human touch and offer a listening ear."
A Summer of Belonging at Camp Oasis
For children and teens living with IBD, Camp Oasis offers something they struggle with getting anywhere else: the freedom to simply be themselves. This year, 1,051 campers found a community where their experiences were understood, their differences didn’t need explaining, and camp could simply be camp. In that environment of belonging, campers build friendships, gain confidence, and develop greater independence in managing their disease, carrying those skills and connections home long after summer ends.
Advocacy in Action: Day on the Hill
Statistics can capture the breadth of a disease, but they can't tell a member of Congress what a 2 a.m. flare feels like. That's the work nearly 100 patients, caregivers, and volunteers carried to Washington this year for the Foundation's Day on the Hill, representing the nearly 1 in 100 Americans living with Crohn's disease or ulcerative colitis.
"Personal stories bring policy to life in a way that statistics alone cannot," says Jason Levine, the Foundation's vice president of advocacy. "By sharing their experiences directly with lawmakers, our volunteer advocates help build understanding, inspire action, and ensure the voices of the IBD community are heard where important decisions are made." They brought three priorities: passing the Safe Step Act, which reins in insurance-mandated "step therapy"—forcing patients to fail on the wrong medication before an insurer covers the doctor-prescribed one; protecting federal research funding; and urging lawmakers to sign a bipartisan letter asking the FDA to make more therapies available to children with IBD.
"Volunteering has connected me with an incredible network of people who understand the challenges of living with IBD," says Jen Volpe, a Foundation Advocacy Champion in New Jersey. "It has transformed feelings of helplessness into action and given me the opportunity to advocate for meaningful change."
Success isn't measured in a single day, but every lawmaker who leaves understanding IBD a little better—and moved to act—is a win. Says Levine: "Every relationship we build brings us one step closer to meaningful policy change."
100 Voices, One Message on Capitol Hill
Real people. Real stories. One mission: turning what it's like to live with Crohn's and colitis into a message lawmakers couldn’t miss.
One Fewer Hurdle Between Patients and Care
UnitedHealthcare drops prior authorization for a range of IBD-related services.
Here's welcome news for people with IBD: UnitedHealthcare eliminated prior authorization—the insurer sign-off often required before a test or treatment—for a broad range of services including colonoscopies. It's part of the insurer's larger pledge to cut prior authorization by 30% by year's end, and it applies across commercial, Medicaid, Medicare Advantage, and ACA marketplace plans.
The change reflects a cause the Foundation has championed since 2023, when our advocates rallied outside UnitedHealthcare to protest new prior-authorization barriers to preventive care. It's a meaningful step toward clearing the unnecessary obstacles between patients and the care they need.
IBDAWARENESS
'Spill Your Guts': Bringing IBD Into the Light
When people living with Crohn's and colitis tell the truth out loud, stigma loses its sting.
What the world sees on the outside rarely reflects the reality of living with IBD, and that invisibility is one of the greatest barriers faced by the community. The Foundation's new Spill Your Guts public service announcements (PSA) bring those hidden experiences into the light, featuring real people bravely telling real stories about their symptoms, the mental toll, and how they keep going on their worst days.
They don't hold back. Sara Levitt, a content creator and model, kept her ostomy secret "for nearly 15 years.” Victoria Tyler had to decide “if I was going to continue to ignore my symptoms to pursue my dreams, or if I was going to pay attention to my body.” Pickleball pro Rob Nunnery returned to the court after his colostomy, determined it "isn't going to stop what I love." Musician Saxl Rose shares just as candidly, offering this promise: "There's a light at the end of the tunnel. This is not going to define the rest of your life."
Since airing, the new PSA campaign has reached TV stations across the country in more than 3,000 airings and counting… helping more people understand what it’s like to live with IBD.
Our Strategic Plan: A Progress Update
The Foundation's live progress page lets anyone follow our work across each of our strategic goals, and, at a glance, the wins are adding up. We are supporting research aimed at preventing IBD. We are advancing policies that support patients’ access to the treatments their doctors prescribe. And we are reaching more people with timely, trusted education and resources to help them navigate life with IBD.
"The tracker shows our shared success," says Orna G. Ehrlich, MPH, the Foundation's Chief of Staff & Impact. "It gives the community more transparent and concrete details on the numbers and stories behind how we're advancing our mission."
Take Steps 2026: Community in Action
This year, Take Steps did what it does best: build togetherness, from across the country. Nearly 60 walk events drew more than 21,000 participants and raised nearly $8.5 million for the fight against IBD. The most telling number? In a post-event survey, 88% of people with IBD agreed or completely agreed they felt less alone after attending.
People find their community at Take Steps. Just ask nine-year-old participant, Banks: "Even though my journey with Crohn's disease hasn't always been easy, the Crohn's & Colitis Foundation has been a true godsend for my family and me. They have given us resources, support, and connections that remind us we are not alone. We are forever grateful and want to help other kids and families who are going through the same thing. That's why we participate in Take Steps."
Look How Far We’ve Walked
Every mile tells a story. Scroll through the faces, families, and first timers who turned dozens of walks into one coast-to-coast community.
A World of Food for People with IBD
Knowing what to eat can be tricky for people living with IBD. Our Gut Friendly Recipes—powered by Nestlé Health Science—helps you reduce stress around your meal choices and enjoy cooking! All recipes have been approved by dietitians that specialize in IBD. With 2.5 million page views, this free resource is serving up inspiration for more enjoyable mealtimes.
Our thanks to the Johnson & Johnson Foundation for their support of Gut Friendly Recipes.
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.
