For Haley Mills, it took almost six months to learn she had Crohn’s disease. A colonoscopy and endoscopy were critical to giving her a diagnosis. In her past 18 years of living with the disease, she has had about 20 surgeries and numerous long-term hospital stays due to flares and inflammation.

When UnitedHealthcare (UHC) announced a new policy to require prior authorization for most physician-prescribed endoscopy and colonoscopy procedures, Haley joined the Foundation at the end of May in taking action to pressure UHC to delay implementing this new policy.

“This policy would have meant the difference between ending up in the hospital or being able to heal at home. The Crohn’s & Colitis Foundation prevented this policy from taking effect at this time so I can avoid the significant delays I would have in getting the colonoscopy I need to make the right treatment decision for me.” Read more here.

Our growing impact in advocacy is discussed further below.

About five years ago, funding from our Genetics Initiative enabled Thad Stappenbeck, MD, PhD—currently a researcher and chair of inflammation and immunity at the Cleveland Clinic Lerner Research Institute—to make an important discovery: An excessive amount of PAI-1, a protein involved in normal blood clotting, was preventing gut ulcers from healing in patients with severe IBD. Using preclinical models of IBD, Dr. Stappenbeck then determined that inflammation and intestinal wall damage would lessen if the function of PAI-1 was blocked.

Academic researchers typically lack the expertise and resources to take a therapeutic target and turn it into a drug that is suitable for use in humans, so the concept might easily have stalled right there. Instead, Dr. Stappenbeck’s project became the first to be supported by the Foundation’s new IBD Therapeutics Incubator, which provides drug discovery expertise from Foundation in-house scientists and Foundation resources to enlist a contract research organization (CRO) to conduct the research necessary to create a new drug. Now, a drug-like compound that blocks PAI-1 had been discovered and is ready for testing in animals.

Meanwhile, via the Senior Research Award program, the Foundation has also supported the research of Stefan Feske, MD, a professor of pathology at NYU Grossman School of Medicine, to explore his study of ion channels, which are pores in cell membranes through which ions such as calcium and sodium pass.

Dr. Feske demonstrated that blocking about 10 specific ion channels results in fewer proinflammatory T cells (a type of immune cell) in the gut. His finding paves the way for using ion channel-blocking drugs to regulate inflammation in people with Crohn’s disease. He is now advancing to develop a drug that would do just that, with the help of additional funding from Takeda pharmaceuticals and the National Institutes of Health.

Our senior and training awards are generously supported by: Ethel Wilson Bowles and Robert Bowles Memorial Fund, The Leona M. and Harry B. Helmsley Charitable Trust, Rochelle and David Hirsch, Linda Tallen & David Paul Kane Educational & Research Foundation, F.M. Kirby Foundation, Margery Lindner Ginsberg in honor of Dr. Allen Louis Ginsberg, and the Bern Schwartz Foundation.

Foundation-funded research is supporting the development of a wearable sensor that monitors biomarkers of inflammation in a patient’s sweat by EnLiSense. The company is developing a device that measures levels of C-reactive protein, IL-6, TNF, and calprotectin in the sweat that forms on the skin during normal daily activities. This project is funded through the Foundation’s venture philanthropy program, IBD Ventures, which supports product-oriented research and development to address unmet patient needs.

The Foundation’s involvement in this project goes back to 2019, when we first provided a grant to Shalini Prasad, PhD, a researcher at the University of Texas, Dallas, via our Novel Technologies Initiative. Dr. Prasad demonstrated that sweat-sensing technology could be used to measure CRP, IL-6, and TNF, which are inflammatory biomarkers that are currently only measured via blood tests. CRP is measured routinely in clinical practice to give an assessment regarding the presence of inflammation. Dr. Prasad has since developed a wearable prototype and demonstrated that increases in these inflammatory biomarkers, as measured via a sweat sensor, correlate to flares in IBD patients.

Recently, Dr. Prasad has demonstrated that the sensor can also detect changes in calprotectin, another inflammatory biomarker that is routinely measured in stool samples.

The Foundation’s investment in EnLiSense (Dr. Prasad is a co-founder) is making it possible for this wearable device to be further refined, tested, and validated in two new clinical studies.

“This is a very exciting biosensor wearable device, because it allows for non-invasive and non-intrusive monitoring of a patient’s inflammatory state,” says Andrés Hurtado-Lorenzo, PhD, senior vice president, Translational Research & IBD Ventures. “It has the potential for patients to get real-time information about inflammatory status and whether they are headed for a flare, rather than waiting months for their next clinical lab tests or endoscopy.”

Our Novel Technologies Initiative was generously supported by: Joe Gugger, the Kulynych Family, the Roddenberry Foundation, and the Zankel Fund.

In April, nearly 200 scientists, venture capitalists, medical device manufacturers, and pharmaceutical company representatives gathered in New York City for IBD Innovate, the premier IBD product development conference. This year’s event featured a wide array of speakers and poster presentations that covered new targets for drug development and microbiome-based solutions. It also included ample networking opportunities.

IBD Innovate, which is sponsored by the Foundation, is the only conference of its kind. “It’s purely focused on product development, from new therapeutics to medical devices, diagnostic tools, and digital health solutions,” says Russell Wyborski, PhD, director, IBD Ventures Investments. The collaborative aspect is key, he adds. “We want to not only advance products by putting money into them, but also by creating an ecosystem that allows key stakeholders to connect and form partnerships that will help bring new help to patients.”
 

Our diet and nutrition resources are among the most popular on our website. Since patients and caregivers are clearly hungry for knowledge on these topics, we’ve expanded the resources we offer on them.

Recently-launched recipe finder

More than 200,000 people have visited GutFriendlyRecipes.org since we launched this recipe finder earlier this year. Gut Friendly Recipes makes meal prep easier for people with IBD or gut health issues, who often struggle to find foods that work for them. Powered by Nestlé Health Science and vetted by dietitians who are experts in IBD, this free tool lets users search more than 500 recipes and sort them based on personal dietary preferences. You can sort by a specific research-backed eating plan (such as the Low FODMAP Diet or the Crohn’s Disease Exclusion Diet) and opt to exclude common allergens and irritants (like gluten or dairy).

New diet and nutrition videos

No single dietary plan works for everyone with IBD, nor should patients rely on dietary changes alone because staying on the right medication is crucial. But there is some evidence that several popular plans may help IBD patients better manage their symptoms. To ensure that patients have a solid foundation for discussing their options with their gastroenterologist or dietitian, our new videos explain the key principles of the Crohn’s Disease Exclusion Diet, the Low FODMAP Diet, the Specific Carbohydrate Diet®, and the Mediterranean Diet. These videos are now live on our site, as well as on YouTube.

In addition, we recently launched a new healthy eating tips for IBD patients video, which provides generalized guidance about the importance of eating a varied diet, making small changes, and consulting with a doctor or a dietitian. “We want to empower patients with this information but remind them to talk with their healthcare team to make sure that they’re getting adequate nutrition and eating in a way that’s beneficial to their overall health,” says Catherine A. Soto, MPA, senior director, Patient Education & Support.

Focus on diet, culture and your body

Food is more than physical nourishment. The society we live in, your culture and religion, and even other IBD patients all have the potential to impact what, when, and how much you eat. Our new Diet, Culture and Your Body page speaks to these complex issues.

The pandemic made Zoom a household name, but there’s something about real-life connection that’s hard to replicate online. While we continue to offer virtual and on-demand programs, our in-person MyIBD Learning programs are now back in full force, and more than 100 events are being offered across the country.

“Some patients are very comfortable finding information online, but many still prefer to be with others impacted by IBD and know that they’re not alone in their journey,” says Ruby Lanoux, senior director, Education and Engagement for the Crohn’s & Colitis Foundation. MyIBD Learning produces a variety of programs, including full-day educational conferences that provide the opportunity to listen to leading medical experts, connect with exhibitors (including representatives from local clinics, infusion centers and pharmaceutical companies), and build comradery with other IBD patients and caregivers.

“Our goal is to offer well-rounded education opportunities and present information that so that patients can access it in whatever manner they prefer and use it to bolster shared decision-making with their providers,” says Lanoux.

Information about upcoming in-person and virtual events is available on our new MyIBD Learning page.

Educating the public about IBD is a crucial part of our mission. On May 19, we celebrated World IBD Day in tandem with organizations from 50 countries on five continents who are all committed to shining a light on the debilitating nature of IBD and making patients’ lives better. Our key contribution: spurring patients and supporters to help create a “Gut Friendly World.” Learn more at crohnscolitisfoundation.org/WorldIBDDay.

Our “Spill Your Guts” public service awareness (PSA) campaign also continues to educate the public about IBD, encourage people with symptoms to get screened, and prompt patients still struggling with uncontrolled symptoms to seek help from a specialist. It also discourages patients from relying on long-term steroids as a first-line treatment. This campaign includes national TV and radio spots as well as a dedicated website at spillyourguts.org.

Spill Your Guts Our public service announcement (PSA) campaign is now airing on over 190 TV and radio stations.

The Foundation was instrumental in pressuring UnitedHealthcare (UHC) to delay implementing a new policy that would have required prior authorization for most physician-prescribed endoscopy and colonoscopy procedures, starting June 1. This decision comes after UHC faced significant backlash from the GI community, and a rally was led by the Foundation alongside IBD healthcare professionals and patients outside UHC’s Minnesota headquarters on May 31. Read more here.

This spring, Foundation advocates participated in two events aimed at growing the Crohn’s and Colitis Caucus, a bipartisan group of members of Congress who have committed to backing research and care-related legislation that would improve the lives of people with IBD. “The Caucus is important because it means we have a go-to group of supporters we can rely on to support our mission,” says Kerry Donohue, associate director, Grassroots Advocacy.

In March, patients, caregivers, and other supporters sent more than 2,000 messages to lawmakers during our Week of Action, during which they emailed, called, and tagged their House Representatives on social media and encouraged them to join the Caucus. A month later, in April, 75 advocates participated in virtual meetings with 50 House of Representatives offices, sharing personal stories that highlighted how they’ve been impacted by IBD. “Volunteer stories are one of the most crucial components of an advocacy campaign,” says Donohue. “Most legislators won’t act on an issue until they hear about it from their constituents.”

In addition to promoting the Caucus, advocates encouraged legislators to support funding for IBD research and reform of step therapy (fail first) protocols, and educated them about the HELP Copays Act. This Act, which is a new priority area for the Foundation, would protect patients’ finances by requiring health plans to count the value from any copay assistance programs toward a patient's deductible and out-of-pocket maximums.

There are many ways to become an advocate.


Learn more at crohnscolitisfoundation.org/get-involved/be-an-advocate

Lack of restrooms is a public health crisis, which is why we’re challenging businesses and municipalities to join our Open Restrooms Movement and permit public access to their bathrooms. We’re also making it easier than ever for patients to find a sympathetic establishment right now via our free We Can’t Wait app, which has been recently enhanced with some great new features. Thanks to these updates, app users can now:

• “Favorite” key locations and view them on the map, as well as in a stand-alone favorites list
• Determine which restrooms in the app are accessible
• View all restrooms in a list format in a pop-up on the map, making it easy to scan and select based on location without needing to tap every pin

These add-ons are designed to help patients map out a trip in advance by picking out restrooms, selecting favorites, and then viewing only their favorites as they travel.

Download the We Can’t Wait app today via the App Store or Google Play.

2022 Financials

More than 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.

View our 2022 Financials

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 2022 Supporters

Past Impact & Annual Reports

Read about the advances the Foundation has made in the IBD space.

View our Past Impact Reports