Impact Report Spring 2023

My son, Patrick, was diagnosed with Crohn’s disease when he turned seven. By getting involved with the Foundation’s Take Steps Walk and Team Challenge, we made connections with many families who live with IBD and are grateful that we haven’t been alone in our journey.

Through the years, I’ve seen friends who were denied access to medicine they were prescribed by their doctor. They could wait months to get on a new drug because they had to fail first on another cheaper one. I couldn’t see the common sense in that. This could easily be Patrick one day.

I wasn’t sure my first visit with the office of my U.S. senator to advocate for step therapy reform made a difference. But over time I developed a connection with his office. I saw how my efforts and that of my fellow advocates were having an effect and how our elected officials were working hard for us. We told our stories to legislators through visits, phone calls, and participation in Days on the Hill to help the bill gain momentum in the state.

It was thrilling to watch step therapy legislation pass unanimously in our state legislature last year. The Crohn’s & Colitis Foundation has given me a microphone and shown me I can change the future for my son and everyone affected by IBD. It has given me a network of friends and support and hope for a cure.

IBD patients have significantly increased levels of a protein called GCPII in their guts, which contribute to inflammation and a leaky gut barrier that allows bacteria and toxins through. With financial support from our venture philanthropy program, IBD Ventures, which was established to advance novel products for IBD, Johns Hopkins researchers have created an oral drug that blocks GCPII biological function and demonstrated its efficacy in animal models of IBD as well as in human gut organoids (miniature organs grown in the lab from patient cells).

The new oral drug, currently known as (S)-IBD3540, is administered by mouth and stays within the gut without getting absorbed into the bloodstream so it should have fewer side effects compared to therapies that reach the bloodstream. “The whole idea came from observations in patients, who hugely overexpress this protein in their guts. In inhibiting it, we see remarkable protective effects,” says Barbara Slusher, PhD, director of Johns Hopkins Drug Discovery Program.

Dr. Slusher and her team are now actively pursuing pharmaceutical partners in an effort to move this candidate drug into clinical trials. Meanwhile, her co-researcher Diane Peters, DVM, PhD, is using IBD Plexus®, the Foundation’s transformative IBD research platform, to identify biomarkers that could pinpoint which patients are most likely to benefit from this novel treatment. The Foundation has also funded Dr. Slusher through our Chronic Abdominal Pain in IBD initiative to explore the role GCPII may have as a treatment for abdominal pain in IBD.

About 70% of people with Crohn’s disease and 30% of those with ulcerative colitis will require surgery at some point, yet there’s been a lack of research on the long-term outcomes. Patient enrollment is now underway for IBD SIRQC, our research study dedicated to following patients who undergo IBD surgery, which launched in 2021 at nine sites in the U.S.

Stefan Holubar, MD, of the Cleveland Clinic, and Samuel Eisenstein, MD, of UC San Diego Health, are leading IBD SIRQC, which stands for IBD Surgical Innovation, Research, and Quality Collaborative. The project is following adults with IBD who are about to have GI surgery from pre-op until two years post-procedure with an eye on tracking complications and disease recurrence.

The Foundation is also supporting surgery-related research by Liliana Bordeianou, MD, MPH, professor of surgery at Massachusetts General Hospital, who has developed a scoring system to measure the more challenging symptoms experienced by many patients who had J-pouch surgery.

Using data from numerous patient surveys, focus groups, and physician input, Dr. Bordeianou has coined and defined the term ileoanal pouch syndrome (IPS). IPS is a summary term that would include all of the more challenging possible symptoms and consequences experienced by some patients who had J-pouch surgery. Dr. Bordeianou then created a scoring system to make it easier for gastroenterologists to evaluate and treat IPS, as well as to provide surgeons with insights that might enable them to refine surgical techniques aimed at avoiding severe IPS in future patients. Dr. Bordeianou’s latest study appears in Annals of Surgery.

Finding something tasty and nutritious to eat isn’t always easy when you have IBD, but we’re hoping to change that. The Foundation is proud to launch Gut Friendly Recipes, our new online resource that is designed to help everyone with IBD and other gut issues find recipes that work for their diets and take some of the stress out of meal preparation.

At GutFriendlyRecipes.org, you can:

• Search more than 500 recipes for different meal types and occasions. Make a snack for yourself or feed 
a crowd!
• Filter your recipe search using your food and diet preferences.
• Register to create weekly meal plans.
• Save your favorite recipes so you can make them again.

All diets included in this recipe finder have research supporting their benefits for gut health, and have been reviewed and approved by dietitians that are experts in nutrition and IBD. We recommend you consult your doctor and dietitian about your diet and meal plans to be sure you’re getting the nutrients and care you need.

“Diet affects every patient very differently, which is why the Foundation is supporting research into Precision Nutrition and providing a variety of educational resources regarding diet and nutrition," says Catherine A. Soto, MPA, senior director, Patient Education & Support. This free recipe resource, which is powered by Nestlé Health Sciences, makes identifying foods that might be helpful for IBD much easier, she says, adding that the recipes include information for how to adjust them if you’re currently flaring or have strictures.

“It empowers patients, in conjunction with their healthcare team, to find new recipes that suit their needs,” says Soto.

Patients who are engaged in their treatment decisions have better health outcomes and better quality of life but taking an active role in your care requires a solid knowledge base. The Foundation has introduced these new resources:

Making sense of medication: Our new IBD Medication Guide

Patients who want to learn more about their current medications or explore new drug therapies can turn to our newly updated IBD Medication Guide. This user-friendly digital tool allows users to search by drug name, class, and administration method. Fact sheets, brochures, and videos are available on the site.

Finding the right healthcare providers

Seeing the right healthcare expert is crucial, yet some patients don’t know where to start or understand the difference between types of specialists.

Our new “Meet Your IBD Care Team” video highlights the roles of the various providers who can be involved in your care—including gastroenterologists, psychologists, and colorectal surgeons—and the importance of coordinated care.

More than 1,300 IBD clinicians, researchers, and industry experts from across the globe convened in Denver in January for the sixth annual Crohn’s & Colitis Congress, co-sponsored by the Crohn’s & Colitis Foundation and the American Gastroenterological Association. Attendees shared the latest in research, therapies, and treatments for Crohn’s disease and ulcerative colitis.

Highlights included a Shark Tank–inspired panel on leading-edge treatment approaches, a patient-led discussion on diversity and inclusion, and a keynote presentation on artificial intelligence. Nutrition and surgical complications were also covered.

No matter the topic, patient centricity reigned, says Tina Aswani-Omprakash, a patient advocate and founder of Own Your Crohn's who served as a patient reporter at Congress. "There was a great focus on multidisciplinary care, including diet, mental health, and overall quality of life," she says. "Even when talking about stem cells, wearable tech, or remote monitoring, all the speakers kept bringing it back to the patient."

Being able to access a public restroom when nature calls is important for everyone but absolutely critical for those who live with IBD and experience the urgency that goes along with it. Yet 53% of the general public who responded to a recent Foundation survey said that they or a family member had trouble finding or accessing a public toilet within the prior seven days.

Furthermore, though many U.S. states have passed legislation to require businesses to open their restrooms to the public in the event of a medical emergency, only 10% of respondents in those states were aware that such legislation had been passed—showing a need for heightened business and public awareness campaigns for these laws.

The survey results also indicated that moving forward, private businesses have an opportunity to create greater public restroom access and simultaneously build stronger customer relationships. For instance, when choosing between two similar competing businesses, 61% of respondents say the business with an open public restroom would positively influence their decision on where to shop.

“These findings bring to light the experience of not only patients but all people with an urgent need of a restroom,” says Cassie Ray, director of advocacy. “This is why the Foundation continues to advocate at the federal, state, and local level for increased restroom access.”

We Can’t Wait app
Our free app makes it easy to locate publicly accessible restrooms on the go. Download it from the App Store or Google Play.50,000 restrooms26,000 downloads

Our three new “Spill Your Guts” public service announcements target patients who are diagnosed but still have breakthrough symptoms. Two TV spots (below) focus on patients who have been using steroids to manage symptoms over the long term. Another spot reminds patients that there are now more therapy options and to talk to a specialist.

As there are more than 66,000 U.S. veterans with IBD, the Foundation is proud to have developed information and resources to address their unique situations, including transitioning to care through U.S. Department of Veterans Affairs’ (VA) healthcare system and advocating for their health needs. We recently welcomed Ray Mabus, 75th U.S. Secretary of the Navy and a Crohn’s disease patient, who joined us in educating veterans about health resources available to them. You can watch Secretary Mabus share his personal story in a video on our website.

On behalf of everyone at the Crohn’s & Colitis Foundation, thank you! Our efforts are fueled by our community of remarkable patients, caregivers, clinicians, researchers, volunteers, and supporters who each day inspire us to keep working hard for better treatments and cures. All year, you participate in our community events, encourage us with your stories of hope and resilience, raise funds for research and awareness of IBD, and make lives of people with living 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.

Download a print version of our 2023 Spring Impact Report here.

Read Our Past Reports

Previous Impact Reports and Annual Reports are available on our archive page. Learn more about our advancements in research, patient education and support, and access to care.

Read our past reports