In this issue
The breakthroughs helping stop IBD before it starts
Global partnerships connect patient insight into everyday IBD care
How pediatric research is improving IBD treatment for children
Camp Oasis teaches about advocacy, confidence, and belonging
Featuredstory
Preventing IBD Before it Starts
How the Foundation Is Shaping What Comes Next
What if IBD could be identified—and even interrupted—before it takes hold? Or what if we could stop the disease from progressing further after you are diagnosed?
The Foundation’s pioneering work in genomics, the microbiome, environmental triggers, and data science, is building a powerful foundation for the next generation of IBD discovery that will unlock new insights toward prevention and IBD cures.
A person may have Crohn’s disease and ulcerative colitis years before symptoms appear. Scientists now describe a “preclinical window,” a period several years before diagnosis when subtle changes in the gut, immune system, and blood may signal future disease.
New tools, from blood and stool testing to environmental and dietary research, are helping to set the foundation for clarifying who may be at risk and when early action could make a difference.
Growing knowledge about early signals, environments, and everyday choices could help people living with IBD and families play a role in protecting their long-term health.
With nearly 1 in 100 people living with IBD, prevention has become a new pillar of the Foundation’s research agenda. “Predicting and preventing new disease, complications, and recurrence will be just as important as treating active disease,” says Alan Moss, M.D., the Foundation’s chief scientific officer.
Can we find a way to stop IBD before it strikes, or keep it from advancing any further in people who already have the disease? The Foundation recently brought researchers together to explore this powerful question. Below are highlights from Foundation-supported researchers who are helping to move IBD care toward earlier understanding and action.
The Science And People Behind Prevention
How the Environment Shapes IBD Risk
Manasi Agrawal, MD, MS
Assistant Professor & Director of Environmental Gastroenterology, Ichan School of Medicine at Mt. Sinai
What surrounds us early in life—from the air we breathe to the foods we eat—may quietly shape the risk of developing IBD years later.
Dr. Manasi Agrawal’s research examines how exposure to pollutants such as microplastics and pesticides, along with diets high in ultra-processed foods, can influence how the immune system functions. She also explores how early antibiotic use and reduced microbial diversity in the gut may affect long-term gut health.
By connecting environmental conditions to biological changes in the body, her work helps move prevention beyond the clinic and into everyday life. “Preventing IBD can remove the impact of the disease not just on the individual, but on families and communities,” she says, emphasizing how awareness and early choices may help shape healthier futures.
Blood Markers and the Future of Early Detection
Ryan Ungaro, MD, MS
Associate Professor of Medicine, Ichan School of Medicine at Mt. Sinai
Focusing on what the body can reveal before Crohn’s disease becomes visible through symptoms, Dr. Ungaro’s research has helped identify blood-based markers that may signal increased risk up to two years before diagnosis, opening the possibility of recognizing risk sooner and guiding more personalized care. He has also shown that milder forms of Crohn’s can follow distinct biological patterns, supporting approaches that tailor monitoring and treatment to a person’s risk profile rather than relying on a one-size-fits-all model.
How Early Nutrition May Help Lower IBD Risk
Ashwin Ananthakrishnan, MD, MPH
Associate Professor of Medicine, Massachusetts General Hospital and Harvard Medical School
For many families, prevention may begin at the table. Dr. Ananthakrishnan studies how early nutrition shapes long-term gut health, using large international birth cohorts to better understand how dietary patterns in infancy may influence IBD risk. His research links diets rich in vegetables, fiber, and fish to lower risk, while frequent sugar-sweetened beverages may increase it.
From Mediterranean-style eating patterns to limiting highly processed foods, his findings translate prevention science into practical, family-centered guidance. “Patients and families want to feel in control. They want to know what they can do to help keep the people they love healthy,” he says, underscoring how small, daily choices can support healthier futures.
VOICES OF IBD
Practicing Medicine on Both Sides of Crohn’s
When gastroenterologist Dr. Greg Cammell was diagnosed with Crohn’s disease during his own colonoscopy, the experience reshaped how he practices medicine. Now, as both doctor and patient, he brings empathy and honesty to every conversation, especially when guiding others through difficult treatment decisions. “When patients express fear about biologics or injections, I can speak as someone living the same reality,” he says. As a father, he also worries about passing the disease on. He envisions a future where genetic screening, early detection, and pre-symptomatic diagnosis can change the trajectory for his patients and his future generations.
ResearchUpdate
Connecting Lives: A Global Effort to Change IBD Care
A new international partnership is expanding the impact of real-world experiences of people with IBD on research and discovery.
The Foundation and an international consortium of leading IBD researchers launched the Global IBD Registry (GLIDE) to link patient data from diverse countries and healthcare systems and advance IBD research worldwide. This shared global platform enables researchers and organizations to learn from a wider range of patient experiences and use those insights to improve care for people living with Crohn’s disease and ulcerative colitis.
Founding partners span the United States, Australia, New Zealand, Spain, Denmark, Israel, Switzerland, Puerto Rico, and India, ensuring that insights reflect the realities of patients around the world, not just a select few.
A cornerstone of the Foundation’s contribution is IBD Plexus®, our research accelerator and home to the world’s most comprehensive collection of IBD patient data and biosamples.
By linking IBD Plexus® with GLIDE, researchers gain deeper insight into how IBD develops, progresses, and responds to care, helping speed the path toward more effective treatments and, ultimately, better quality of life for patients and families.
For Kids with IBD, Paths to Better Treatments Are Designed Just for Them
A new collaboration ensures children aren’t treated as small adults, but as children with distinct needs.
For too long, children living with inflammatory bowel disease (IBD) have faced limited treatment options, with pediatric specialists often relying on adult-approved medicines used “off-label.” Now, a new collaboration is aiming to change that.
The Crohn’s & Colitis Foundation is supporting a new global initiative—the Critical Path Disease Modeling Coalition—bringing together the nonprofit Critical Path Institute® and leading pediatric experts worldwide to develop advanced models of how IBD progresses in children.
By simulating how pediatric disease progresses, these tools are designed to support better clinical trial design and create clearer, more predictable paths for developing and approving new therapies.
The Foundation’s role helps ensure that research and innovation stay focused on what matters most: bringing safer, more effective treatment options to children with IBD and the families who care for them.
Navigating IBD Care as Kids Grow: What New Data Show
As children with inflammatory bowel disease (IBD) grow into young adulthood, the care they need—and the systems they must navigate—change quickly.
Findings from a recent Foundation survey published in the medical journal Crohn’s & Colitis 360 shine a light on the challenges young adults with IBD face when accessing and paying for their care.
The survey included 1,781 respondents, spanning pediatric caregivers, young adults, and older adults living with IBD. One key finding: young adults were more likely to face step therapy requirements, meaning insurance plans required them to try certain medications before accessing the treatment their doctor originally prescribed. These delays can disrupt care during a critical period of transition.
Young adults also reported feeling less confident knowing what questions to ask their insurer when coverage problems arise, especially compared to caregivers who have often spent years advocating on their child’s behalf.
Financial strain was another common theme. Nearly one in five young adults reported taking on extra work or additional hours to afford healthcare or insurance costs related to IBD. That pressure can affect school, career choices, and overall well-being.
Together, these findings underscore an important truth: As kids with IBD grow up, support must grow with them. The Foundation is taking action, by advocating for insurance reform, creating resources to help young adults navigate care, and raising awareness across the healthcare community.
VOICES OF IBD
The Hidden Exhaustion of IBD: Fighting for Care, Every Day
"I’ve had Crohn’s disease for about 20 years now, and one of the things that people with IBD don’t often talk about is just how exhausting having IBD is. And I’m not just talking about how you feel, but how you have to advocate for yourself almost every day. With insurance companies, with doctors, and with drug manufacturers…you have to always advocate for yourself. There’s no one who does it for you.
"My hope for the future is that health insurance companies and specialty pharmacies make it easier for patients and accept coverage for many of the medications they often block."
- Ian Goldstein
Powering Decades of Breakthroughs
Explore the Path to Breakthroughs, where discovery meets possibility. See how your generosity has powered decades of progress in IBD research, and how the breakthroughs still ahead are within reach.
PatientSupport
Camp Oasis: Where Confidence Grows and No One Faces IBD Alone
For kids and teens with IBD, Camp Oasis offers something powerful: a place where shame is replaced with belonging.
New findings from the Foundation’s 2025 Camp Oasis survey show that after attending camp, participants were nearly 50% less likely to feel embarrassed about having IBD than they were before camp.
That shift matters: Reduced stigma can help young people feel more confident, more open, and more at ease managing their condition, both at camp and in everyday life.
“No one has to pretend or explain anything—we all just get it,” says Savannah, a third-year camper who’s had Crohn’s disease “for as long as I can remember.”
“Every year, I feel more confident,” she adds. “One day, I really want to be a camp counselor so I can help younger kids feel the same support and happiness that camp has given me.”
The data also points to lasting impact. Even before camp began, returning campers were roughly 31% less likely to feel embarrassed about their IBD than first-time campers, suggesting the benefits of Camp Oasis extend well beyond a single summer.
“Camp Oasis offers life-changing benefits for children living with IBD, especially helping them feel less isolated,” says Camp Oasis Director Lori Butterfield. “For 57% of new campers, Camp Oasis is the first time they have ever met another young person with IBD. That shared experience creates an immediate sense of belonging, breaking down stigma, and replacing embarrassment with confidence, connection, and pride in who they are.”
VOICES OF IBD
Horses, cabins, and friends who understand. Camp Oasis through Savannah’s eyes
"Even though I’m used to a lot of it by now, some parts [of having Crohn’s disease] are still really tough. There are also things that have helped me a lot, especially Camp Oasis. Riding horses is one of my favorite things in the world, and getting to do it at camp with friends who understand what I’m going through makes it even better. I also love hanging out in the cabins, listening to music, and just talking with people who have Crohn’s or colitis, too.”
- Savannah, third-year camper at Camp Oasis
New Tools and Support for the IBD Community
Our newest digital resources are designed to deliver practical guidance you can access when it matters most.
Understanding Endoscopy: What to Expect, What to Ask
A new video walks patients through what to expect before, during, and after the procedure.
Aging With IBD: Supporting Body and Mind
This new resource provides guidance on mental health, quality of life, and navigating care over time.
Trusted Apps: Support at Your Fingertips
This curated list of apps and digital services can help with everything from finding a restroom and managing diet and exercise to mental wellness.
MyIBD Connections: Expanded Support, Stronger Community
The Foundation is committed to bringing people with IBD, caregivers, and healthcare professionals together through culturally relevant, community-centered education programs.
Our Morning of Culture/Community programs are now MyIBD Connections for Black/African American, Hispanic/Latino, and LGBTQIA+ communities. While the name is new, the mission remains the same: to inform, empower, and educate individuals from communities that experience IBD differently in terms of diagnosis, symptoms, and access to care and treatments.
“Our goal is to ensure that everyone impacted by IBD feels empowered to take charge of their health,” says Caneka McNeil Moore, Ed.D., associate vice president of Education & Diversity Engagement.
Program updates and registration information are available on our MyIBD Learning page.
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