CCF Annual Report

A Message from Our Leadership

Better Together

Putting patients first

Reaping the Returns

Speeding Toward Cures

building powerful Partnerships

Financials and Supporters

We’re accelerating the pace of our fight against inflammatory bowel disease with the help of our powerful community of scientists, healthcare providers, policy makers, and—of course—patients and caregivers.

A Message from Our Leadership

Over 50 years ago, our founders joined together with shared goals and a common vision. In the years since, the inflammatory bowel disease (IBD) community has grown exponentially; together, we have made tremendous progress toward achieving our mission. Our many accomplishments are proof that we are better together. We are the largest community of IBD patients and caregivers in the country, engaged in the fight against Crohn’s disease and ulcerative colitis, and it is together that we can achieve a world without IBD. In 2018, with your help and support, we saw critical advances in our mission programs and introduced major new initiatives focused on the expansion and acceleration of our research investments, along with increased focus on our critical education, support, and advocacy efforts. To date we have invested over $350 million in critical research, which has resulted in tremendous progress, including significantly improving patient quality of life and moving us closer to cures. In the last 10 years alone, we have funded essential research in key areas, with multimillion-dollar investments across multiple institutions. In our drive toward better treatments and cures, we are accelerating research on a variety of fronts by breaking down traditional barriers to patients, data, and collaborations. In 2018, research partners in academia and the pharmaceutical industry gained access to an unprecedented amount of biosamples, along with extensive data collected from thousands of patients through our unique IBD Plexus platform. This important platform will cut years off the research process, and will dramatically accelerate the pace of scientific investigation for our partners. We are also seeing our longer-term investments paying off in very significant ways—in fact, we are on the cusp of major breakthroughs that will have a real impact on patients’ lives:

Putting Patients First

iet is a much-talked-about topic within the IBD community, with both patients and physicians wondering about its role in the management of both Crohn’s disease and ulcerative colitis. That’s why the Crohn’s & Colitis Foundation is using a grant from the Patient-Centered Outcomes Research Institute (PCORI) to look at two different diets and their ability to manage symptoms in patients with Crohn’s disease. “Patients want to know what to eat, and we struggle with what to tell them,” explains lead investigator James Lewis, MD, a professor of medicine and epidemiology at the Perelman School of Medicine at the University of Pennsylvania.

ur ultimate vision is a future free from Crohn’s disease and ulcerative colitis. In the meantime, we’re funding a number of unique projects that are poised to help patients gain access to products, tools, and treatments that will make their lives better.

Building Powerful Partnerships

ince our inception in 1967, the Crohn’s & Colitis Foundation has been dedicated to improving the lives of people with IBD, but we know that we can't do it alone. Our non-profit, volunteer-fueled organization thrives because we bring the voices of our IBD patient and caregiver community to the table in all our initiatives.

Inspiring and Engaging the Entire IBD Community

Social media

Awareness/ fund-raising events

Patient support

Patient engagement in research

Legislative reform

Accelerate the Pace of Change

How we’re reaching it: By creating unique partnerships with academics and commercial entities that bring together the best minds in IBD research.

To Leverage Our Major Research

How we’re reaching it: By taking what we’ve learned and building on key findings.

ur aim at the Crohn’s & Colitis Foundation is to ensure patients and caregivers receive the education and support they need to build resilience and to live their best lives,” says Catherine Soto, director of patient education and support at the Foundation. “Every patient is at a different point in their life and at a different stage of their disease journey. Whether they’re just beginning to try to understand their disease, making new decisions, seeking different treatment options, or searching for help with the psychosocial impact of IBD, it’s important that we are able to offer the resources they need.” 2018 saw an increase in the size and scope of the resources we provide, including new information about the financial management of IBD and additional mental health support. Mental health and emotional support No patient or caregiver should feel isolated or remain uninformed; that’s what drives our efforts to create multiple avenues for connection and emotional support. “Our Crohn’s & Colitis Community website is a space in which both patients and caregivers can hear each other’s stories in discussion forums, ask questions to experts, and join online support groups,” says Soto. These monthly, web-based groups are varied, and most often consist of four 90-minute sessions led by an expert facilitator. Each week, these support groups focus on a specific IBD topic, such as the basics of IBD, medical management, nutrition issues, and more. In 2018, participation in all live support programs increased by 168%. Educational opportunities In 2018, many patients and caregivers attended live, in-person education events. Additionally, our educational webcasts and videos garnered over 200,000 views. Our focus is to meet people wherever they are—from cities to rural areas and every place in between—as well as to offer in-depth information from experts that people can watch in their own homes. “But education and support aren’t just about experts sharing information. Another important approach has been to embed patient stories into a range of educational materials. This has allowed us to address topics of interest from the patient’s perspective,” says Soto. Financial management of IBD “When you have a chronic illness like Crohn’s or ulcerative colitis, you have to become a savvy manager of costs and of your health,” says Laura Wingate, senior vice president, education, support & advocacy. You also have to become an expert in health insurance issues, and act as your own or your loved one’s advocate. That’s the driving force behind our improved suite of financial resources, which helps patients and caregivers find available financial assistance for ostomy supplies or medications, information about co-pay accumulator programs, tips on what to do if you’re denied insurance coverage, and much more.

Empowering the IBD Community

How we’re reaching it: By increasing support and education for patients and caregivers, while providing them with the tools they need to take charge of their care. We are proactively fighting alongside the IBD community to ensure they have access to the treatments they need.

Breaking down barriers to progress

Since our inception, the Crohn’s & Colitis Foundation has been firmly committed to funding research that has the potential to change the lives of people with IBD. In 2018, we continued to support ongoing studies that are yielding fruitful results, while also investing in new endeavors that hold the promise of uncovering unique treatments and tools. Here’s a look at some of the most exciting research findings of 2018, as well as a glimpse into the not-so-distant future.

ack in 2006, I saw a flyer for a Team Challenge half marathon in Napa, California, and thought, why not? In reality, there were plenty of good reasons not to push myself. Just a few years earlier, surgeons had removed five feet of my colon, and 17 years of taking steroids had taken such a toll on my joints that I had pins in my hips. But I needed something to strive for. I ended up becoming really close to everyone on my virtual training team, and when I crossed the finish line, I was ecstatic. That half marathon wasn't my first introduction to the Crohn’s & Colitis Foundation: I’d been involved with the New Jersey chapter since I was diagnosed with Crohn’s as a teenager (I’m now the NJ Chapter board president). It wasn’t my first athletic event with the organization, either; I’ve led a Take Steps walk team for as long as I can remember. But I wanted something to work toward. There are so many who have this disease and are so sick that they can’t leave their houses—but I can. That’s a main driver. I’ve since completed more than 35 Team Challenge events, but a few years ago I got artificial hips and had to give up running the half marathons (though I continue walking in them). Still, when I heard that Team Challenge was heading to the Grand Canyon for the first time, I knew I had to be part of it. I was 49—my husband gleefully points out that I’ll turn 50 this year—and I’ve always wanted to visit the Grand Canyon. The event was the perfect opportunity to make it happen. I got to check something off my bucket list, do it with my Team Challenge friends, and raise money for something near and dear to my heart.

60% of campers returning from Camp Oasis, our summer camp for kids with IBD, describe it as life-changing. Marni Goldman, now 16, found her tribe—and a new attitude about her disease— during her very first visit.

ducating healthcare professionals and connecting clinicians, researchers, and industry leaders are crucial parts of our mission. 2018 was a banner year for the Crohn’s & Colitis Foundation in this area, as we hosted three significant conferences, all of which were brand new and brought together participants from across IBD research, clinical, and commercial communities that might not ordinarily work together. Crohn’s & Colitis Congress We partnered with the American Gastroenterological Association to produce the first annual Crohn’s & Colitis Congress. This brought together more than 1,300 clinicians, researchers, and others who have dedicated their careers to advancing the field of IBD, getting to cures, or improving the care of patients. Multidisciplinary panel discussions and specialized workshops were among the highlights. “The audience was diverse, as were the topics. We covered best practices and research innovations, as well as lifestyle and psychosocial issues,” says Caren Heller, MD, MBA, the Crohn’s & Colitis Foundation’s chief scientific officer.

2018 by the Numbers: Putting Patients First

Questions from patients, caregivers, and providers through our IBD Help Center

Unique views of our live and archived IBD education webcasts and videos

Patients and caregivers hosted at live education events

Increase in attendance of patients and family members at in-person support groups from 2017

11,704

237,476

9,041

21%

In pediatrics... We made several key breakthroughs with our RISK Stratification Study, the largest-ever patient study of pediatric Crohn’s disease.

2018 by the Numbers: Reaping the Returns

Scientific papers published, thanks to research we funded

209

Patients’ biosamples in IBD Plexus—a 58% growth from launch in late 2017

Patients’ data stored in IBD Plexus, our information exchange platform that’s poised to become the largest research database for Crohn’s disease and ulcerative colitis in the world

Increase in our number of hospital or clinical partnerships, which reflects the growth in our institutional sponsorships, pool of volunteers, and interest in our support and educational programs

29,000

20,000

59%

2018 by the Numbers: Speeding Toward Cures

SPARC IBD participants across nine sites, whom researchers will follow to understand their response to treatments and how to predict this response or their loss of response

1,300

Applications reviewed for investigator-initiated grants, and 53 new ones funded

Invested in over 250 new and continuing projects at over 100 U.S. and international institutions

$23.8M

304

1,300

Uniting Stakeholders to Care and Cure

How we’re reaching it: By engaging patients and supporters, soliciting major donors, and keeping the momentum going strong.

2018 by the Numbers: Building Powerful Partnerships

Increase in proceeds raised from spin4 crohn’s & colitis cures events across the country since 2017

Generated thanks to the efforts of 60,000 participants at Take Steps community walks across the country

Grant from The Leona M. and Harry B. Helmsley Charitable Trust to expand IBD Qorus, our quality-of-care initiative designed to improve patient outcomes by standardizing treatment

Increase in the amount of federal funds that will be devoted to IBD research in 2019, thanks to the Foundation’s advocacy efforts

$11M

33%

$3.4M

$136M

hen it comes to inflammatory bowel disease, drug treatment is often elusive. While many patients respond to standard therapies, such as biologics, about half of all patients either don’t respond initially or experience loss of response to these medications. That’s why Efi Kokkotou, MD, PhD, ScD, associate professor of medicine at Beth Israel Deaconess Medical Center and Harvard Medical School, has made it her life’s mission to find a drug that will help the majority of patients.

Scientist Spotlight

Speeding Toward Cures

hen I was 7 years old, my mom called me down from my bedroom to watch a video. It was about Camp Oasis, a sleepaway camp for kids with Crohn’s disease or ulcerative colitis. She thought I might be interested in going to the camp—which started in just three weeks—but she wanted it to be my choice. I hadn’t even finished watching the promo video before I said, “Mom, I have to go there!” Still, I was scared when we first arrived; I wouldn’t let go of my mom’s leg. I’d never been away from my parents overnight, but right away I met a girl named Sabrina. Within five minutes, we clicked. It was her second summer at the camp, so she knew everything and stuck with me. We have been friends ever since. We still talk every day, even though we only get to see each other twice a year. Camp Oasis really did change my life. Since everybody there has either Crohn’s or colitis, it's easy to relate to each other. You don’t have to worry about saying, “I have to run to the bathroom,” because everyone knows what that’s like. At a regular camp they might say, “Can you wait five minutes?” but you can’t. But everyone there understands the struggle. I’m 16 now, so this will be my last year as a camper, and then I’ll hopefully get to be a Leader-in-Training. Once I’m 19, I’ll be able go back as a counselor. From the first time I was there, that’s what I wanted to do. It’s hard to put into words what Camp Oasis has done for me, because I just love it so much. It’s given me a more positive outlook about my condition. During the year, I can be really negative about my Crohn’s; when I get home from camp, and for months after, my whole outlook changes. I’m positive. I’m like, “Let’s tackle this head on.” Just being with people who understand changes everything.

Michael Osso President and CEO

Reaping the Returns

2018 Annual Report

We’re here to support patients and caregivers in all areas and at every stage of their disease journey.

n ecologist with a bucket of pond weeds can deduce myriad details about the setting from which those plants were collected: water temperature, oxygen levels, even the site’s proximity to woodlands and agricultural fields. A similar principle applies to the trillions of bacteria, fungi, viruses, and other microorganisms, known as the gut microbiome, that live in the gastrointestinal (GI) tract.

Connecting healthcare providers, researchers, and innovators

hen Ross Maltz, MD, diagnoses a child with Crohn’s or ulcerative colitis, he works with the family to identify what they believe to be the ideal treatment for their particular case. Whether the patient will actually get to use that medication right away, however, is often unclear. “I always add the caveat that I have no idea what the insurance company is thinking, but will fight for what is best for the patient,” says Maltz.

With the help of advocacy volunteers, we’re pushing hard for legislative reform that puts patients first.

hen Donald Lum, MD, a gastroenterologist in Portland, Oregon, is about to see a patient in his clinic, he first checks their patient-reported survey on the IBD Qorus dashboard. “I look for what their number one concern is that day, which allows me to really zero in on what my patient needs,” he says.

IBD Qorus, our quality-of-care initiative, helps patients and providers to make more informed healthcare decisions together.

Efi Kokkotou’s groundbreaking research is paving the way for new IBD treatments.

Innovative tools have the potential to change lives

on-profit organizations don’t traditionally designate a portion of their funding to support the work of commercial entities, but that’s precisely what IBD Ventures—formerly known as the Entrepreneurial Investing Initiative—is largely about. Funding recipients for this program are selected based on the likelihood that they’ll be able to bring a novel drug, diagnostic test, or device to market in the foreseeable future. “The goal is to select and fund the right product opportunities that, if successful, will have a meaningful impact for patients in the shortest amount of time possible,” says Andres Hurtado-Lorenzo, PhD, the Crohn’s & Colitis Foundation’s senior director of translational research. Through IBD Ventures, the Foundation is currently supporting several unique projects that aim to benefit IBD patients quickly. The hope is that, in the not-too-distant future, patients could have access to: ● A live bacterial cocktail that slows or stops disease progression ● A blood test that predicts whether a patient is at high or low risk for aggressive disease ● New drug treatments that work by inhibiting enzymes that are elevated in people with IBD

In genetics... Our years of investment in genetics research has paid off. This has helped identify over 240 genetic mutations that are now associated with IBD.

In lifestyle... The Foundation helped to launch crucial research in this area in 2018.

● We expanded on findings reported in a 2017 paper published in The Lancet that identified a predictive model for complications requiring surgery in pediatric Crohn's disease. The original research was based on patient follow-up for at least three years. We now have additional information, attained by following this group for two more years. This is particularly important in helping us to understand long-term outcomes, and to help us to support pediatric patients who are entering adulthood. ● We discovered that levels of the blood protein COL3A1—a type of gene that helps make collagen—was significantly higher among patients who ultimately went on to develop small intestinal strictures (narrowings in the small intestine). This research was published in the journal Clinical Gastroenterology and Hepatology in September 2018. ● We published a prospective study in the American Journal of Gastroenterology in October 2018 examining the impact of early-life environment on Crohn’s disease progression. We used data from 1,119 Crohn’s subjects, recruited from our RISK inception cohort, and found that pediatric Crohn’s patients who had been breastfed were less likely to develop complications, such as strictures, while maternal smoking during pregnancy was associated with an increased risk of hospitalization and surgery. In 2019, we’ll be expanding our search for blood-based biomarkers, analyzing hundreds of thousands of them in an attempt to identify potential protein signatures and signals that can be used as powerful diagnostic and screening tools in the future. Our hope is to use this information to help identify, in a minimally invasive manner, the approximately 20% of pediatric patients who rapidly progress to complicated disease requiring surgery.

● In 2018, we continued this momentum by investigating C1orf106, a gene that, when mutated, raises the risk of developing ulcerative colitis. This gene is particularly interesting because it’s involved in stabilizing the adherens junction, which is the glue between the cells that line the gut. When this is altered, it can cause defects in the gastrointestinal barrier, allowing substances from the gut to leak into the bloodstream and trigger symptoms of ulcerative colitis. These findings pave the way for future research into new therapies that can restore or prevent the leaky gut in ulcerative colitis by targeting this gene or the protein it generates. ● Researchers participating in our Genetics Initiative also discovered that increased levels of plasminogen activator inhibitor-1 (PAI-1)—a substance in the body involved in normal blood clotting—may be a crucial reason why some IBD patients don’t respond to the standard, first-line therapy of anti-TNF drugs. The study, published in early 2019 in the journal Science Translational Medicine, demonstrates that patients with severe disease had high levels of PAI-1. The researchers also found that when PAI-1 was pharmacologically inhibited, both inflammation and damage to the lining of the digestive tract improved in mice with severe colitis. Researchers at Washington University are attempting to create molecules to block PAI-1 in the body, in the hope that it will one day develop into a potent drug. To support these efforts, the Foundation established a collaboration with a drug discovery company that will provide specialized expertise in therapeutics development. This aims to further advance the discovery of potent PAI-1 inhibitors, in partnership with our academic researchers.

● At UCLA, researchers are evaluating changes in the composition of the gut microbiome and its metabolic byproducts (metabolites) in response to perceived stress. They are also monitoring the brain imaging of patients with IBD in an attempt to correlate specific markers of brain–gut communication with symptoms. We hope that this will yield more information about who is most susceptible to disease flares when exposed to psychological stress. ● The second study—being conducted at the University of Alabama at Birmingham—focuses on the role of early-life stress in the development and progression of IBD. These researchers are examining a specific blood-based vascular biomarker that is known to be elevated in early-life stress. The first part of the study focuses on how early-life stress impacts gut inflammation and the overall immune system. The second part will involve collecting blood samples from pediatric IBD patients who have also undergone robust neuropsychological evaluations, in order to check levels of this blood-based vascular biomarker. Once researchers have a better sense of patient stress levels, they will be monitored to establish whether stress leads to more severe disease or more frequent flares. Both studies are still in the patient recruitment stages, with plans to begin collecting data in 2019.

One of the promising advances in this area involves analyzing the microbiome.

What’s going on in IBD patients’ guts can yield important clues about disease triggers and how to overcome them.

Thanks to a recent grant from a partnership between the Crohn’s & Colitis Foundation and Pfizer's Centers for Therapeutic Innovation (CTI), Kokkotou is on her way. “About a decade ago, I identified a potential target molecule, melanin concentrating hormone (MCH), that’s been implicated in the origin of inflammatory bowel disease,” she explains. Kokkotou’s groundbreaking research found that people who over-express this molecule are more likely to ultimately develop IBD. “MCH promotes inflammation and the release of cytokines that in turn break down epithelial, immune, and stroma cells,” she says. This in turn leads to the onset of IBD.

In another Crohn’s & Colitis Foundation–funded project, investigators at Vedanta Biosciences are developing a living cocktail (essentially a super probiotic) that floods the gut with beneficial microbes that are vigorous enough to outcompete species found in patients with Crohn’s and colitis. “The microbiome in a person’s gut,” explains Honig, “is not static; it might change in response to diet, medication, aging, illness and infections, and, possibly, swallowing the right type of beneficial bacteria.” Such work builds on the Foundation’s decade-long commitment to microbiome research. It’s particularly exciting to see the field evolving from basic discovery to the kinds of clinical applications that could directly improve patient health. “There is widespread conviction in science and industry that this could be a new paradigm in human health,” says Honig.

Imagine... wearing a bracelet that warns you of an impending flare

Imagine... swallowing a pill that sends information about your disease status to your smartphone

Imagine... taking a simple blood test and learning about how your disease will progress

One day you might be able to do just that, thanks to scientific developments in sweat-sensing technology. Researchers have already figured out how to detect a variety of substances that are secreted in sweat. By measuring glucose, for example, someone with diabetes can monitor their blood sugar level (though this technology is still being perfected). Shalini Prasad, PhD, is leading a team at the University of Texas, Dallas, that believes a similar strategy can be applied to people with IBD—and she’s determined to prove it. “The goal is to capture sweat in real time—you wouldn’t have to exercise or be sweating profusely—to measure inflammatory biomarkers in it, alert a patient about any changes, and enable them to make some informed decisions about their treatment,” she explains.

You already use your phone to check the weather, the stock market, and so much more; why not get alerts about the state of your GI health? First, you’d have to swallow a capsule that's loaded with sensors. That capsule is exactly what Timothy Lu, MD, PhD, and his colleagues at MIT are in the process of developing. While so-called capsule endoscopy already exists, it currently simply contains a tiny camera that isn’t always appropriate to use for people with Crohn’s, especially those with developed strictures. The capsule that Lu’s group is perfecting is being specifically created for use by IBD patients. If they’re successful, not only will such a capsule provide a visual glimpse of the digestive tract, it will also be used to predict disease flares, thanks to its numerous sensors that detect inflammatory markers and gases that are associated with changes in disease activity.

When someone finds out that they have breast, colon, or prostate cancer, they can take a test that analyzes their tumor and provides information about their risk of recurrence. Those results, in turn, allow them to make important treatment decisions. Do they need the most extensive type of surgery? Is it safe to opt out of chemotherapy or radiation? Patients who are newly diagnosed with IBD have similar questions about how aggressively—or not—they should be treating their disease, but right now it's mostly a guessing game. That may soon change, thanks to a new blood test called PredictSURE IBD™. According to research conducted in Europe, 91% of people who had multiple relapses within 12–18 months of taking the test had been correctly identified by the test as being in the high-risk group. We are currently funding a study to find out whether this tool will be equally accurate when used on Americans with IBD.

“Camp Oasis Changed My Life”

A Comprehensive Approach

Equal Partners in Care

What We’ve Learned—and What’s Up Next

Diet Matters

A new study compares the Mediterranean diet against the Specific Carbohydrate Diet™.

Exploring the Microbiome

An Innovative Strategy

Imagine Living Better with IBD

Meetings of the Minds

Partners for Policy Change

To date we have invested over $350 million in critical research, which has resulted in tremendous progress, including significantly improving patients’ quality of life and moving us closer to cures.

The Crohn’s & Colitis Foundation is constantly striving to engage patients and supporters through a variety of new and diverse events. In 2018, our Team Challenge program offered its first official hike option, with a select group of participants joining us for a hike through the Grand Canyon. For long-time Team Challenge participant, Lori Dunbar, it was the perfect way to celebrate a milestone birthday and raise money for a cause that’s near and dear to her heart.

Reaching New Heights

IBD Qorus is the Crohn’s & Colitis Foundation’s expanding national program that aims to improve the quality of care delivered to patients. It works to not only empower patients to become better advocates for themselves, it also encourages and enables clinicians to share best practices with their peers via a collaborative Learning Health System. But it all comes back to the patient–clinician relationship. “A younger patient might tell me that coming in for infusions every eight weeks doesn’t work for their lifestyle, or that a certain medication is too expensive, which is something I might not have thought of before IBD Qorus,” says Lum, “So together, we look for other options.” IBD Qorus is helping to prove that when patients are actively involved, the delivery of care is inevitably better.

The study randomizes patients for 12 weeks, allocating them to either a Mediterranean-style diet, which focuses on foods such as olive oil, low-fat dairy, fish, fruits, vegetables, and beans, or the Specific Carbohydrate Diet (SCD), a more restrictive way of eating that eliminates all refined or processed foods, as well as carbohydrates, such as soy, lactose, sucrose, grains, and starchy vegetables like potatoes, okra, and corn.

During the 12-week trial, patients eat food prepared by an outside vendor for the first half and make their own meals for the second. “We think it’s important for people to learn how to follow these plans on their own,” explains Lewis. Researchers gauge results through subjects’ self-reported physical symptoms as well as by measuring certain biomarkers for inflammation, such as C-reactive protein (measured via a blood test) and calprotectin (measured in stool). Lewis says all data will be collected by the end of 2019. “Hopefully, this research will give us some answers,” he adds. “Right now, we don’t have a good gestalt of how restricted patients’ diets actually need to be. This study, along with other work being done in the field, could help change that.”

“O

In an effort to contain costs, insurance companies frequently insist that patients try a cheaper treatment and fail to improve sufficiently on it before agreeing to cover a more expensive drug. This protocol, known as step therapy or “fail first,” puts patients at risk for uncontrolled symptoms and irreversible disease progression. Maltz’s patients face better odds than most. At Nationwide Children’s Hospital in Columbus, Ohio, this pediatric gastroenterologist has four staffers who help him appeal coverage decisions, and they often go through multiple rounds to get patients the medications they need. However, such staffing is rare, and many providers are forced to alter their treatment recommendations to satisfy insurers.

After years of hard work, 2018 marked some notable achievements. Thanks to over 200 volunteers (including Maltz) who participated in our state advocacy efforts, step therapy reform legislation passed in Ohio and Minnesota. Any step therapy policy in those state-regulated plans must now be medically sound and come with a clear, quick appeals process. More bills are being passed in states across the nation, and the federal bill is steadily advancing. Having lived with Crohn’s for two decades himself, Maltz has both personal and professional stakes in these victories. “I’m very excited that we achieved step therapy reform in Ohio and Minnesota,” he says. “But we have a lot more to do. There are many more states with step therapy reform bills currently being considered, and I hope in the next year or so we can get a federal bill signed into law.”

Our Goal:

“We know that there are certain patterns in the composition and abundance of gut bacteria and in their metabolic products that are characteristically observed in people with IBD,” says Gerard Honig, PhD, the Crohn’s & Colitis Foundation’s associate director of research innovation. Those patterns are beginning to provide important clues about how a patient's disease might progress. Eventually, researchers may even be able to use them to predict who will get IBD in the first place. In addition to learning more about how the microbiome might affect IBD development or trigger a flare, several projects that are supported by the Crohn’s & Colitis Foundation’s Microbiome Initiative are exploring whether information about the gut’s ecosystem could help clinicians provide a more personalized approach to treatment. “One of the promising advances in this area involves analyzing the microbiome and using it to make predictions about which patients are going to respond to which drugs,” says Honig. In May 2017, Cell Host & Microbe published results of such a study that was funded, in part, by the Crohn’s & Colitis Foundation. Investigators identified two species of bacteria common to the GI tracts of IBD patients that responded well to vedolizumab, a type of drug called a monoclonal antibody, which helps to regulate the immune system by targeting specific proteins. This drug is usually only considered after treatment with an anti-TNF drug has failed; if doctors knew ahead of time who would benefit from vedolizumab, they could prescribe it to those patients straight away.

Social media

In 2018, we had 12 million impressions on Facebook, as well as 8.4 million people reached and 405,000 engaged users who were looking to discover more about living with Crohn's disease or ulcerative colitis and find inspiring patient stories.

We shared information about living better with IBD, with more than 25,000 Twitter followers, an increase of 12.5% from the previous year.

Our presence and impact on Instagram grew by 66%, and we had over 164,000 engagements with our content, an increase of 76% from 2017.

12 Million

25,080

66%

2.8 Million

Awareness/fund-raising events

We proved that we're better together by encouraging patients and supporters to connect at 108 Take Steps community walks across the country in 2018. Approximately 60,000 participants joined together to walk for cures.

We showed more patients and supporters that raising funds can be fun: 54% of spin4 crohn's & colitis cures participants were new to the organization in 2018.

Over 922 Team Challenge participants crossed the finish line in half marathons, bike races, and other events. We exceeded the $25 million mark in funds raised since the inception of Team Challenge.

54%

$25 Million

Patient support

8,332

1,144

We continued to ensure that no one has to fight IBD alone: 8,332 patients and family members attended in-person support groups in 2018.

We gave 1,144 kids with IBD the chance to connect with others just like them at Camp Oasis, our co-ed residential summer camp, across 12 campsite locations in 2018. We awarded 487 camp scholarships based on family need.

Patient engagement in research

173,994

We encouraged patient participation in research. In 2018, there were 173,994 interactions with our Clinical Trials Community’s educational resources, which aim to increase awareness of clinical trials and educate patients and healthcare providers.

We launched the Clinical Trials Ambassador Program and trained 34 ambassadors who are available to connect with patients interested in participating in clinical trials.

Legislative reform

216

1,351

We grew our Advocacy Network volunteer list and received 1,351 responses to an Advocacy and Access to Care Survey, which will inform our public policy priorities.

Donald Lum, MD

Gerard Honig, PhD

Efi Kokkotou, MD, PhD, ScD

Ross Maltz, MD

2018 was a year of major new initiatives and expansion across our research investments, advocacy efforts, and patient, caregiver, and professional education programs.

Top: Lori Dunbar at a Grand Canyon overlook the morning after the hike. Bottom: Lori and her hiking group on the hike down the Bright Diamond Trail.

Because of my joint problems, I settled on the gentlest of the three options: the South Rim Adventure, which entailed hiking a nine-mile round trip. In the Grand Canyon, being immersed in beauty and these incredible surroundings, you can’t help but be in awe. The people I was with were amazing. You get kind of transported to a different place where nothing else matters—you’re part of this family, where you can talk about anything and everything. I didn’t guard my words, didn’t guard myself. I could talk about my health, my feelings. I was my truest self. The level of intimacy and vulnerability in this place of incredible beauty was life altering. Prior to doing that first half marathon and getting involved with Team Challenge, I hardly told anyone about my Crohn’s diagnosis. I tried to mask everything. Since then, my voice is large. I travel a lot for work, and on the airplane I typically wear a Team Challenge jacket, or a t-shirt that says, “Ask me about my Crohn’s disease.” One of my goals is to raise as much awareness as I can.

No patient should have to go through trials of the wrong medication in order to get the appropriate, originally prescribed medication.

To even the playing field, the Crohn’s & Colitis Foundation has been campaigning for federal and state laws designed to strengthen the appeal process, so that patients can access the treatments they need in a timely manner. On more than one occasion, says Maltz, an insurance company has demanded that he use outdated treatment protocols, which means that those patients end up missing out on treatments that could help them dramatically. As part of a coalition of patient advocacy groups, the Foundation has been educating lawmakers about the importance of step therapy reform, crafting model legislation, and testifying in state legislatures across the country.

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Our flagship site, www.crohnscolitisfoundation.org, received more than 2.8 million visits in 2018, as more patients and caregivers turned to us for help, advice, and support.

60,000

Clinicians, researchers, and other IBD leaders who attended our first annual Crohn’s & Colitis Congress

I look for what their number one concern is for today, which allows me to really zero in on what my patient needs.

I identified a potential target molecule, melanin concentrating hormone, that’s been implicated in the origin of inflammatory bowel disease.

Now Kokkotou is working with scientists from Pfizer CTI to evaluate the potential of MCH as a therapeutic target for IBD. Kokkotou is inspired by the millions of adults worldwide who struggle with IBD. “We either need to find a drug that will help 80 or 90% of patients, or match available drugs to people by using personalized medicine,” she stresses, noting that about 70% of people with Crohn’s disease and 30% with ulcerative colitis ultimately end up undergoing surgery. The goal: to find effective disease-modifying drugs that prevent the progression of the disease and induce sustained remission.

We celebrated our successes and planned for the future at galas, golf tournaments, and other special events across the country, generating $18.7 million in the process.

$18.7 Million

Imagine... wearing a bracelet that warns you of an impending flare

Imagine... swallowing a pill that sends information about your disease status to your smartphone

Imagine... taking a simple blood test and learning about how your disease will progress

The Crohn’s & Colitis Foundation is the leading non-profit organization focused on both research and patient support for inflammatory bowel disease (IBD). The Foundation’s mission is to cure Crohn’s disease and ulcerative colitis, and to improve the quality of life for more than 3 million Americans living with IBD. Our work is dramatically accelerating the research process through our database and investment initiatives. We also provide extensive educational resources for patients and their families, medical professionals, and the public.

Learn more at crohnscolitisfoundation.org

In genetics... Our years of investment in genetics research has paid off. This has helped identify over 240 genetic mutations that are now associated with IBD.

In pediatrics... We made several key breakthroughs with our RISK Stratification Study, the largest-ever patient study of pediatric Crohn’s disease.

In lifestyle... The Foundation helped launch crucial research in this area in 2018.

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2018 Annual Report

2018 Research Awards

2018 Friends of the Foundation

Corporate Supporters

Board of Trustees

Miguel Quiros, PhD The Regents of the University of Michigan Ann Arbor, MI The role of the pro-resolution lipid mediator resolvin E1 in intestinal epithelial wound healing Carlo De Salvo, PhD Case Western Reserve University Cleveland, OH Role of gut microbiota in the pathogenesis of intestinal fibrosis Olga Sarmento, PhD Mayo Clinic Rochester, MN EZH2 prevents IBD by silencing critical T cell gene networks responsible for the production of pathogenic FOXP3+ cells Michael Schumacher, PhD Children’s Hospital Los Angeles Los Angeles, CA The role of macrophage-specific ErbB4 in regulating colitis Siddharth Singh, MBBS University of California, San Diego La Jolla, CA Impact of obesity on disease course and treatment response in inflammatory bowel diseases

Ryan Ungaro, MD Icahn School of Medicine at Mount Sinai New York, NY Assessing predictors of response to anti-tumor necrosis alpha therapy in early inflammatory bowel diseases patients Qun Wang, PhD Iowa State University of Science and Technology Ames, IA Targeted delivery of intestinal stem cells to treat inflammatory bowel diseases Casey Weaver, MD The University of Alabama at Birmingham Birmingham, AL Interplay of T cell subsets in IBD pathogenesis Jie Yan, PhD Yale University School of Medicine New Haven, CT IRF5 contributions to intestinal immune homeostasis and inflammation Shiyan Yu, PhD Rutgers University–Newark Newark, NJ Role of Paneth cell lysozyme in modulating microbiota colonization and IBD pathogenesis

The influence of genetic variants on the antiinflammatory response to interleukin 10: relevance to very early onset inflammatory bowel diseases

The Leona M. and Harry B. Helmsley Charitable Trust has been a visionary supporter of Crohn’s disease research and the Crohn’s & Colitis Foundation, providing significant support in 2018 to IBD Plexus , IBD Qorus , and the Cost of IBD initiative. The Helmsley Charitable Trust also supported the following awards:

Rana Al-Sadi, PhD University of New Mexico Albuquerque, NM MMP-9 modulates intestinal epithelial tight junction barrier and intestinal inflammation Ashwin Ananthakrishnan, MD, PhD Massachusetts General Hospital Boston, MA Microbiome predictors of response to anti-TNF and anti-integrin therapy in inflammatory bowel diseases Rajatava Basu, PhD University of Alabama at Birmingham Birmingham, AL IL-1-mediated regulation of the Th17 developmental program and its role in IBD Samuel Bertin, PhD University of California, San Diego La Jolla, CA TRPA1 and TRPV1 ion channels as novel therapeutic targets in inflammatory bowel disease Michael Bscheider, MD Stanford University Palo Alto, CA Vitamin D signaling and dendritic cell control of immune homeostasis and colitis Lili Chen, PhD Icahn School of Medicine at Mount Sinai New York, NY Interplay of IL-23 and commensal microbiota in the development of colitis in mice Maria Ciofani, PhD Duke University Medical Center Durham, NC Network approach to dissecting Th17 cell mediators of IBD Valerie Curtis, PhD University of Colorado Denver, AMC and DC Aurora, CO Human deneddylase-1 (DEN-1) in the resolution of mucosal inflammation Jennifer Dotson, MD, MPH The Research Institute at Nationwide Children’s Hospital Columbus, OH The effect of provider bias and patient/family hardships on healthcare disparities in pediatric inflammatory bowel disease Mark Frey, PhD Children’s Hospital Los Angeles Los Angeles, CA Suppression of pro-inflammatory macrophage activity by ErbB4 Melanie Gareau, PhD University of California, Davis Davis, CA The microbiota-gut-brain axis in pediatric IBD Jeremy Goettel, PhD Boston Children’s Hospital Boston, MA Investigating the role of the human microbiome in mucosal immune homeostasis using humanized mice Akihito Harusato, MD, PhD Georgia State University Atlanta, GA IL-36-mediated regulation of chronic and acute intestinal inflammation

Shinya Ito, MD The Hospital for Sick Children Toronto, ON Assessing the drug exposure risk of infants breastfed by women with inflammatory bowel disease Sangwon Kim, PhD New York University School of Medicine New York, NY Role of GPR15 in T cell homing to the large intestine Hiroko Kitamoto, PhD University of Michigan Ann Arbor, MI Gut dysbiosis increases the risk of clostrodium difficile infection in patients with inflammatory bowel diseases Frits Koning, PhD Leiden University Medical Center Leiden, Netherlands Identification of Crohn’s disease-specific immune signatures through high-resolution multiparamater analysis of the intestinal immune system Yelizaveta Konnikova, MD, PhD Brigham and Women’s Hospital, Inc. Boston, MA High dimensional immunophenotyping and functional assessment of intestinal tissue in VEOIBD Devesha Kulkarni, PhD Washington University in St. Louis St. Louis, MO Goblet cell dysfunction in intestinal inflammation Pawan Kumar, PhD Stony Brook University Stony Brook, NY IL-17 receptor signaling and intestinal host defense Sila Kurugol, PhD Boston Children’s Hospital Boston, MA Motion-robust quantitative MR imaging markers for assessment of inflammation and fibrosis in Crohn’s disease Ka Man Law, PhD University of California, Los Angeles Los Angeles, CA The role of 133a-aftiphilin interaction in colonic inflammation Jihyung Lee, PhD University of California, San Diego La Jolla, CA The novel function of cyclic AMP signaling in dendritic cells for the inhibition of colitogenic T cells Damian Maseda, PhD Vanderbilt University Medical Center Nashville, TN Control of regulatory and colitogenic T cells in murine IBD by PGE2 Nayden Naydenov, PhD Virginia Commonwealth University Richmond, VA Inhibition of protein translation initiation and disruption of the intestinal epithelial barrier in IBD Jodie Ouahed, MD Boston Children’s Hospital Boston, MA The influence of genetic variants on the antiinflammatory response to interleukin 10: relevance to very early onset inflammatory bowel diseases

The Crohn’s & Colitis Foundation is pleased to acknowledge the following donors whose gifts were designated in support of individual researcher awards.

F.M. Kirby Foundation Wenhan Zhu, PhD UT Southwestern Medical Center Dallas, TX Precision targeting Enterobacteriaceae during gut inflammation ameliorates colitis and colorectal cancer development Pauline Arama-Olsten & Arlena Olsten through Champions for Charity Steven Itzkowitz, MD Icahn School of Medicine at Mount Sinai New York, NY SAPPHIRE: Safety of Immunosuppression in A Prospective Cohort of Inflammatory Bowel Disease Patients with a History of Cancer Roddenberry Foundation Corey Siegel, MD Dartmouth-Hitchcock Medical Center Lebanon, NH Hyperbaric oxygen therapy for moderate to severe ulcerative colitis flares: a multi-center, randomized, double-blind, sham-controlled trial Linda Tallen & David Paul Kane Educational and Research Foundation David P. Kelsen, MD Memorial Sloan-Kettering Cancer Center New York, NY A genomics alterations analysis of colitis-associated cancers

The Crohn’s & Colitis Foundation is pleased to acknowledge the following investigators for their excellence in research approaches to advancing our knowledge of IBD.

North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) Career Development Award Jodie Ouahed, MD Children's Hospital Boston Role of interferon lambda signaling in mucosal homeostasis and infantile-onset inflammatory bowel disease

Champions Gwen and David Baker Rolf Benirschke Legacy Foundation David R. Clare & Margaret C. Clare Foundation in memory of Margaret Lynne Clare Becky and Chris Collette The Derenzo Charitable Foundation The Dodson Foundation The Dorfman Foundation Patty and Alex Funderburg Rose Galick Revocable Trust Marlene A. Gaskins Charitable Remainder Trust Michael J. Gaughan Andi and Jim Gordon Robin Kaplan Memorial Fund Kulynych Family Foundation I, Inc. The Leavitt Family Foundation Edward D. & Anna Mitchell Family Foundation Roddenberry Foundation Ilene Schwartz Trudi and Christopher Seiwald Bonnie and Andrew Stern Sara Tayeb-Khalifa and Family Ali and Alan J. Vaynerchuk Hannah and Karl Voskuil Mary and Tim Walsh Jodi and Charles Yellen The Zankel Fund Anonymous (2)

Visionaries The Crown Family The Leona M. and Harry B. Helmsley Charitable Trust Carole and Ira Pittelman Janet and Elvin Price Heidi and Chris Stolte Michelle and Howard Swarzman Anonymous (1) Innovators Lisa and Matt Chanoff Anonymous (1) Pioneers Ann and Jay Davis Marcy and Arthur Falcone Ellen and David Horing The Manners/Coole Foundation in memory of Joanne Melhuish The Wilbur May Foundation Dulcy and Jerry Rosenberg Ellie Carmody, MD and Daniel Stone

Friends The Steven M. Agin Memorial Fund Estate of Carol W. Akselrod The Alkek and Williams Foundation Bonnie and Charles Alter ASCRS Research Foundation C. Kenneth and Laura Baxter Foundation, Inc. Rachelle and Howard Balaban Lisa and Arvindh Balakrishnan Katherine and Mark Bellissimo Leo L. Benatar Margot and Michael Benstock Angela and Robert Biggar Edith C. Blum Foundation, Inc. Anthony Bongiorno Ethel Wilson Bowles and Robert Bowles Memorial Fund Nancy and Howard Brown Livi and Chase Carpenter Sally E. Connolly The Leon and Toby Cooperman Family Foundation Kitty and Ander Crenshaw Randi and Joel Cutler The Derfner Foundation Cathy and Alessandro DiNello DSF Charitable Foundation The Samuel R. Dweck Foundation and The Elno Family Foundation Engelstad Family Foundation Arthur J. Epstein Linn Michelet-Epstein and Jonathan Epstein Lori and Howard Fensterman Flowerree Foundation Allyson and Bill Fox Herman Friedman Michael J. Fugle Living Trust Fulk Family Foundation Lauren and Steven Geduld Rollin M. Gerstacker Foundation Greg Gilbert The Gillman Family Laurence T. Ginsberg Lisa and Douglas Goldman Fund Jodi and Allan Golotko Peter Golotko Kelley and Tom Gunkel Hellman Foundation Elizabeth Herrick Stephen B. Herrick Himan Brown Charitable Trust Robert B. Hinton, Jr. Rochelle and David Hirsch Hittman Family Foundation Tina Hoffman and Geoffrey Schechter Helene Houle and John Nasseff Karen and David Howe Deirdre and Don Imus Alissa and Joel Isaacson Estate of Harold A. Jacobs The Helen C. Janco Testamentary Trust for Maurice Janco Penny Bursch-Johnson and Dan Johnson Zachary Julius Sandra and Jeffrey J. Justin The Kanter Family Foundation Estate of Michele Marie Kapaun The David & Meredith Kaplan Foundation Marcia and Ned Kaplin Elia & Fannie Karas Foundation The Louis J. and June E. Kay Foundation, Inc. Howard Kaye Susan and Michael Kerr

Maryellen and Richard Keyser F.M. Kirby Foundation The Klaman Foundation Stephanie Kramer Jill and Kurtis Krentz Kritchman Family Foundation Inc. Stefanie and David Levenson Estate of Shirley W. Liebowitz Allison and Howard Lutnick Mann Charitable Foundation Carol and Stephen Marcus Debbie and Jeff Margolis Nancy and Kelly Marx The McCready Family John P. McGovern Foundation Lara Englebardt Metz and Corey Metz Diane and Stanley Miller Marcia & Mark Miller Family Foundation Eve and Stephen E. Milstein Marcia Rolfe-Mishaan and Richard Mishaan Pam and Jeffrey W. Mittleman Tammy and Joe Monk Alice and Mort Mortenson Kate and David Mortenson David & Linda Moscow Family Foundation The Donald R. Mullen Family Foundation Inc. Grib D. Murphy Francine and Laurance Nagin Elyse and Michael Newhouse Pauline Arama-Olsten & Arlena Olsten through Champions for Charity Sari Orentreich Mass Pamela and Edward Pantzer The Patriarch Family Foundation Gail and Berndt Perl Lori and Louis Plung Gary Podell Diane Pregerson Glazer Robert Van Pulley and Family Ed Rachal Foundation Claudia and Jan Rask Sumner M. Redstone Foundation Barbara and Frank M. Resnek Carolyn and Marc Rowan Dora and Steve Rubin Lauren and Mark Rubin Lisa and Mark Schneider Sara and Greg Seifert Ellen and Steven Shapiro Sam R. Shapiro Cynthia and Bruce Sherman Ellen and Steve Shulman Karen S. Singer Snyder Family Foundation Paul G. Somerville Elisabeth Straus Estate of Francis Stribling Joshua Stumpf The Eric M. Suhl Foundation Michele A. and Steven L. Sweetwood Linda Tallen & David Paul Kane Educational and Research Foundation Flora L. Thornton Foundation Carmella and Peter Tully Vassil Family Foundation Jodie and Miguel Weinstein Rebecca and Terry Wiler Elizabeth Heyman Winter Faith and Dave Workman Lisa and Chris Wyett Anonymous (5)

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.

Visionaries AbbVie Eli Lilly & Company Janssen Biotech, Inc. Pfizer, Inc. Takeda Pharmaceuticals U.S.A., Inc. Innovators Allergan Plc Boehringer Ingelheim Pharmaceuticals, Inc. Celgene Corporation Pioneers Gilead Sciences, Inc. UCB, Inc. Champions Genentech, Inc. Nestlé Health Science Salix Pharmaceuticals UnitedHealth Group

Friends Alfasigma U.S.A., Inc. Arena Pharmaceuticals, Inc. Atlanta Attachment Co./Hickory Springs Manufacturing Co. Atlanta Gastroenterology Associates Barnett Capital Bloomberg L.P. Bristol-Myers Squibb Company Capital Digestive Care Capital Group CDM Smith Centerview Partners, LLC Dietz & Watson Foundation The Durst Organization L.P. Edmunds & Associates, Inc. Express Scripts Goldman Sachs Greater Houston Golf Charity Island Operating Company MDC/Richmond American Homes Foundation Med Learning Group Medtronic Plc Meijer, Inc. Metlife Microsoft Corporation Minnesota Gastroenterology, PA Nice-Pak Products Ogletree, Deakins, Nash, Smoak & Stewart, P.C. OptumRx Inc Outsource America, Inc. c/o Leaddog Marketing Group, Inc. Parametric Portfolio Associates Praxis Communications Prometheus Laboratories, Inc., A Nestlé Health Science Company Shire Plc UPMC Valero Services, Inc. The Walmart Foundation Wells Fargo Foundation Media Partners Outcome Health Reach MD

The Crohn’s & Colitis Foundation is proud to recognize the generosity of corporations around the world for supporting programs in research and patients and professional education as well as a host of events in communities nationwide. We thank these companies for joining with us in the battle against inflammatory bowel diseases.

IBD Plexus A massive research exchange platform that allows researchers to dramatically accelerate their work by tapping into biosamples and extensive data already collected from over 20,000 patients Environmental Triggers Initiative Funding for research on environmental factors—such as viruses, psychological stress, and diet—that may contribute to IBD IBD Ventures A funding mechanism dedicated to supporting novel product-oriented research and development Microbiome Initiative A consortium of the country’s top IBD researchers who are studying the ways in which intestinal microbiota contribute to Crohn’s disease and ulcerative colitis Pediatric RISK Stratification Study An ongoing, multi-center study that follows over 1,000 children with Crohn’s disease, which aims to identify factors that predict developing disease with complications requiring surgery IBD Partners Our patient-powered research network IBD Qorus A quality-of-care initiative designed to improve outcomes by encouraging shared decision-making between patients and clinicians

Investigator-Initiated Grants We solicit grant applications from scientists around the globe, and at all career stages; 304 applications were vetted and 53 new studies were funded in 2018 Patient Education and Support Webcasts, educational videos, and online guides (including medication guides) that provide tips on living better with IBD and financial management resources, as well as online and in-person support programming to bring patients together Professional Education In-person and online programs, including the annual Crohn’s & Colitis Congress for healthcare providers and researchers Camp Oasis Our sleepaway camp for children with IBD Patient Advocacy Support for legislative changes, including step therapy reform Awareness Campaigns to raise awareness of Crohn’s disease and ulcerative colitis and to help to educate the public about these diseases

Where the Money Goes

More than 80 cents of every dollar the Crohn’s & Colitis Foundation spends goes to research, education, or support services.

Financials and Supporters

2018 Planned Giving: Founders Society

The Crohn’s & Colitis Foundation greatly appreciates the generosity and foresight of individuals who have included the Foundation in their estate planning. If you have made estate plans that include the Foundation and would like to share with us, please contact Allison Coffey, Chief Development Officer, at 917-476-6511 or acoffey@crohnscolitisfoundation.org.

Isabel B. Anderson Amber and Andrew Backhaus Anushree Bag Lois Bailey Arnold Baker Kevin Barnes Gila Belsky and Alexander Modell Grace Benedikt Wendy and Philip Bentlif Mary E. Berry Alicia and Tim Blank Marilyn and Dave Blood Susan and John Borzenski Judi and Phil Bounsall Mikel and Bryce Breitenstein Jill Brenneman Larry Britsman Dona M. Browne Rona Budovitch Lander Burr Joan Canfield Susan and Daniel Carr Krista Castell Jennifer Christensen Nancy and Dennis Ciccone Laura Clifford Allison Coffey and Michael Ogrysko Alex Cohen Sue Cohn and Scott Weinstein Becky and Chris Collette Ellen M. Collins Phil Conley Michelle Covington Laura Cridlebaugh Gerald Croan Carolyn and John Crosson Clara and Brian Cruden Betsy and Phil Culberson John Dayton Martha and Dale Delano Vera Deutsch Cathy and Alessandro DiNello Kathryn Dins Rhondell and Glenn Domilici Virginia and Kenneth Dunst Georgette Edkins Irene and Bernard Eizen Ruth and Maury Ettleson Mary Jane Evans Karen M. Findora Amy Finkelstein Alan B. Finn Dean Fiorelli Pattie Moxham-Fisher and Michael Fisher Elise Foland Evelyn Fox Martha S. Frank Richard Frankel William Frankenstein Mary and Timothy Franklin Linda Fraser Michele Freadman Diane Froot Brenda Fudell Patty and Alex Funderburg Arlene Galbert Gary Garfield Robert B. Garman Deborah and Vance Gibbs Annette and Leonard Gilman Deborah P. Goldberg Diane and Donald Goldfarb Steve Goodman Mona M. Gordon Randi B. Gordon Miriam Gottlibb Julie Grable Debbie and Greg Greenberg Marcia Greenburg Davis Lorri Greif Fanny Gruszecki Jill and Michael Hainkel Bruce Hartzmark Mary Sue and Robert Hawk Daniel L. Hawkins Barbara L. Heidecker Paula and Gary Hilbert Deanne Hill Herbert Hirsch Hanna L. Hombordy Nancy and William Homeyer Celia J. Honig Gerald L. Honl Michele Kissous-Hunt and Daniel Hunt Sharon and Sanford Kahn Dawne and Mark Kaufman June Kay Millicent Kellner Beth King Michael Klein and Jeffrey Ward Steve R. Koonin Mary Lou and Don Kortz Julie and Michael Koss Jill and Kurtis Krentz

Renee Landau Eric A. Landau Gloria Langos Patricia LaPedus Judith Ludwig Levine Shelly and Ronald Levy Michael Libys David Linemeyer Lucia A. Loding Adeline Luckman Juanita and Roger Ludke Harvey S. Luterman Rusty Maddox Theodora Mahoney Margaret Marasco Marc Marasco Thomas G. Martin Carolyn Martin Patti M. Masarek Nancy J. McNabb Henry J. Meyer Shelby Modell Tammy and Joe Monk Cynthia and John Monter Noel Moore J. Roger Morrison Martha Morrison Philip S. Muller Charles R. Munsey Barbara and Robert Murray Joan and Mark Murray Marcy and Jeremy Nanus Barbara and Bob Nieder Rose Marie Nilsson Agnes E. Nixon Debra and Peter O'Connor Jeana and Paul Ogren Maria Oliva-Hemker Annclaire Oscar Carole A. Ostroff Sarah-Katharine Owen Gilbert Pallen Renee F. Parente Santos G. Perez Neil Pessin Oscar E. Peterson Christine Pitt Kathryn Pizza Christine Pollock Evelyn and Mark Pope Robert Van Pulley Rex H. Rathbun Rosalyn C. Richman Carol and Seymour Roberts Robin M. Roger Mona J. Rosenberg Joan and Steve Rosenfeld Susan and Joel Rosh Warren Ross Cynthia L. Roth Carol and Arnold Rudoff Aimee and Frank Russomano Selma P. Ryave Carolyn W. Sampson George J. Saunders Linda Saunders Lisa and Mark Schneider Ronald M. Schwartz Frank Scottie Sally and Larry Sears Carol and Robert Sexton Lanie and Gary Sinderbrand Susan Sivitz Betty Smith George W. Smyth Kim and Scott Snapper Sheldon Sokol John S. Spiecker Pam A. Staats Sylvia D. Steinbrock Bonnie and Andrew Stern Rebecca and Eric Stone Beverly Taubel Jane and Kenneth Thomas John B. Thompson, II Julie Townsend Jeff Tupper Lawrence Vandervoorn Salvatore Varveri Kathryn Vaughan Helene and Joseph Victor Sara Jane and Martin Victor Rene Warren Judith and Arie Weissman Bob Whinehold Ray Whitaker Marilyn and John Whitcher Nancy A. Wiltgen Linda Windsor John W. Wine Mark S. Yanochko Jodi and Charles Yellen Phoebe and Charles Yochim Anonymous (4)

National Trustees: Amber Backhaus Minneapolis, MN Noël Brown New York, NY Jason Burr Oneonta, NY Christopher Collette Excelsior, MN The Hon. Ander Crenshaw Jacksonville, FL Alessandro DiNello Birmingham, MI Alex Funderburg Charlotte, NC Paula J. Hilbert Basking Ridge, NJ Michele Kissous-Hunt, PA-C New York, NY Donald Kortz Cherry Hills Village, CO Joseph Monk Bloomington, IL Mark Murray, PhD Seattle, WA Marcy Beth Nanus Upper Saddle River, NJ Maria Oliva-Hemker, MD Baltimore, MD Jennifer O’Neill Pleasantville, NY Joel Rosh, MD Morristown, NJ Cynthia Roth Morgantown, WV Frank Russomano Ambler, PA Eric Stone San Francisco, CA Jodi F. Yellen New York, NY

Officers: John Crosson, Board Chair Los Angeles, CA Vance Gibbs, Esq. Immediate Past Board Chair Baton Rouge, LA Brent Polk, MD NSAC Chair Los Angeles, CA Scott Snapper, MD, PhD Immediate Past NSAC Chair Wellesley, MA Andrew Stern, Esq., Secretary Sea Grit, NJ Robert “Van” Pulley, Treasurer McLean, VA Michael Osso President & CEO (non-voting) New York, NY Robert Territo COO/CFO (non-voting) Middletown, NJ Ronald Goldsman Assistant Secretary (non-voting) VP, Finance Forest Hills, NY Co-Founders: William Modell (deceased) Shelby Modell Long Island, NY Irwin Rosenthal (deceased) Suzanne Rosenthal (deceased) Long Island, NY

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Patients and clinicians have always known that stress undoubtedly impacts IBD, but so far the mechanism for this has proved elusive. Last year, the Foundation led the way in this historically under-funded area by supporting two new studies focusing exclusively on psychological stress.

John Crosson Chair, Board of Trustees

Better Together

Michael Osso President & CEO

John Crosson Chair, Board of Trustees

2018 Research Awards

2018 Friends of the Foundation

2018 Planned Giving: Founders Society

2018 Board of Trustees

Corporate Supporters

Visionaries AbbVie Eli Lilly & Company Janssen Biotech, Inc. Pfizer, Inc. Takeda Pharmaceuticals U.S.A., Inc. Innovators Allergan Plc Boehringer Ingelheim Pharmaceuticals, Inc. Celgene Corporation Pioneers Gilead Sciences, Inc. UCB, Inc. Champions Genentech, Inc. Mortenson Construction Nestlé Health Science Salix Pharmaceuticals UnitedHealth Group

Isabel B. Anderson Amber and Andrew Backhaus Anushree Bag Lois Bailey Arnold Baker Kevin Barnes Gila Belsky and Alexander Modell Grace Benedikt Wendy and Philip Bentlif Mary E. Berry Alicia and Tim Blank Marilyn and Dave Blood Susan and John Borzenski Judi and Phil Boundall Mikel and Bryce Breitenstein Jill Brenneman Larry Britsman Dona M. Browne Rona Budovitch Lander Burr Joan Canfield Susan and Daniel Carr Krista Castell Jennifer Christensen Nancy and Dennis Ciccone Laura Clifford Allison Coffey and Michael Ogrysko Alex Cohen Sue Cohn and Scott Weinstein Becky and Chris Collette Ellen M. Collins Phil Conley Michelle Covington Laura Cridlebaugh Gerald Croan Carolyn and John Crosson Clara and Brian Cruden Betsy and Phil Culberson John Dayton Martha and Dale Delano Vera Deutsch Cathy and Alessandro DiNello Kathryn Dins Rhondell and Glenn Domilici Virginia and Kenneth Dunst Georgette Edkins Irene and Bernard Eizen Ruth and Maury Ettleson Mary Jane Evans Karen M. Findora Amy Finkelstein Alan B. Finn Dean Fiorelli Pattie Moxham-Fisher and Michael Fisher Elise Foland Evelyn Fox Martha S. Frank Richard Frankel William Frankenstein Mary and Timothy Franklin Linda Fraser Michele Freadman Diane Froot Brenda Fudell Patty and Alex Funderburg Arlene Galbert Gary Garfield Robert B. Garman Deborah and Vance Gibbs Annette and Leonard Gilman Deborah P. Goldberg Diane and Donald Goldfarb Steve Goodman Mona M. Gordon Randi B. Gordon Miriam Gottlibb Julie Grable Debbie and Greg Greenberg Marcia Greenburg Davis Lorri Greif Fanny Gruszecki Jill and Michael Hainkel Bruce Hartzmark Mary Sue and Robert Hawk Daniel L. Hawkins Barbara L. Heidecker Paula and Gary Hilbert Deanne Hill Herbert Hirsch Hanna L. Hombordy Nancy and William Homeyer Celia J. Honig Gerald L. Honl Michele Kissous-Hunt and Daniel Hunt Sharon and Sanford Kahn Dawne and Mark Kaufman June Kay Millicent Kellner Beth King Michael Klein and Jeffrey Ward Steve R. Koonin Mary Lou and Don Kortz Julie and Michael Koss Jill and Kurtis Krentz

Renee Landau Eric A. Landau Gloria Langos Patricia LaPedus Judith Ludwig Levine Shelly and Ronald Levy Michael Libys David Linemeyer Lucia A. Loding Adeline Luckman Juanita and Roger Ludke Harvey S. Luterman Rusty Maddox Theodora Mahoney Margaret Marasco Marc Marasco Thomas G. Martin Carolyn Martin Patti M. Masarek Nancy J. McNabb Henry J. Meyer Shelby Modell Tammy and Joe Monk Cynthia and John Monter Noel Moore J. Roger Morrison Martha Morrison Philip S. Muller Charles R. Munsey Barbara and Robert Murray Joan and Mark Murray Marcy and Jeremy Nanus Barbara and Bob Nieder Rose Marie Nilsson Agnes E. Nixon Debra and Peter O'Connor Jeana and Paul Ogren Maria Oliva-Hemker Annclaire Oscar Carole A. Ostroff Sarah-Katharine Owen Gilbert Pallen Renee F. Parente – Kim confirming Santos G. Perez Neil Pessin Oscar E. Peterson Christine Pitt Kathryn Pizza Christine Pollock Evelyn and Mark Pope Robert Van Pulley Rex H. Rathbun Rosalyn C. Richman Carol and Seymour Roberts Robin M. Roger Mona J. Rosenberg Joan and Steve Rosenfeld Susan and Joel Rosh Warren Ross Cynthia L. Roth Carol and Arnold Rudoff Aimee and Frank Russomano Selma P. Ryave Carolyn W. Sampson George J. Saunders Linda Saunders Lisa and Mark Schneider Ronald M. Schwartz Frank Scottie Sally and Larry Sears Carol and Robert Sexton Lanie and Gary Sinderbrand Susan Sivitz Betty Smith George W. Smyth Kim and Scott Snapper Sheldon Sokol John S. Spiecker Pam A. Staats Sylvia D. Steinbrock Bonnie and Andrew Stern Rebecca and Eric Stone Beverly Taubel Jane and Kenneth Thomas John B. Thompson, II Julie Townsend Jeff Tupper Lawrence Vandervoorn Salvatore Varveri Kathryn Vaughan Helene and Joseph Victor Sara Jane and Martin Victor Rene Warren Judith and Arie Weissman Bob Whinehold Ray Whitaker Marilyn and John Whitcher Nancy A. Wiltgen Linda Windsor John W. Wine Mark S. Yanochko Jodi and Charles Yellen Phoebe and Charles Yochim Anonymous (4)

The Crohn’s & Colitis Foundation greatly appreciates the generosity and foresight of individuals who have included the Foundation in their estate planning. If you have made estate plans that include the Foundation and would like to share with us, please contact Allison Coffey, senior vice president of advancement, at 917-476-6511 or acoffey@crohnscolitisfoundation.org.

2018 Friends of the Foundation

Corporate Supporters

AbbVie Alfasigma U.S.A., Inc. Allergan Plc Arena Pharmaceuticals, Inc. Boehringer Ingelheim Pharmaceuticals, Inc. Celgene Corporation Daiichi Sankyo, Inc. Eli Lilly and Company Genentech, Inc.

Gilead Sciences, Inc. Janssen Biotech, Inc. Medtronic Plc Pfizer, Inc. Prometheus Laboratories, Inc., A Nestlé Health Science Company Salix Pharmaceuticals Shire Plc Takeda Pharmaceuticals U.S.A., Inc. UCB, Inc.

In addition to the partnerships we have with a wide variety of corporations, we also partner with various pharmaceutical and medical device companies who broadly support the work of our Foundation. These President’s Corporate Circle members have provided support for various programs and initiatives that span our entire mission continuum.

The following companies have shown their support of our Take Steps, Team Challenge, and spin4 crohn’s & colitis cures national events through corporate team participation, donations, and other means.

Take Steps: AbbVie Aurora BayCare Medical Center Bellin Health Bon Secours Children’s Services at St. Mary’s Hospital Borland-Groover Clinic, PA Capital Digestive Care Capital Group Celgene Corporation Connecticut Children's Medical Center Eli Lilly & Company Janssen Biotech, Inc. Minnesota Gastroenterology, PA Salix Pharmaceuticals Takeda Pharmaceuticals U.S.A., Inc. Texas Digestive Disease Consultants, PA The Pediatric IBD Center at Cohen Children’s Medical Center – Northwell HealthUCB, Inc. Valero Services, Inc.

Team Challenge: AbbVie Medtronic Plc. Pfizer, Inc. Shire Plc Takeda Pharmaceuticals U.S.A, Inc. UCB, Inc. spin4 crohn’s & colitis cures: AbbVie Takeda Pharmaceuticals U.S.A., Inc. UCB, Inc.

2018 Planned Giving: Founders Society

2018 Board of Trustees

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2018 Research Awards

The IBD Qorus Collaborative in Las Vegas, Nevada.

Top: Marni (second from right) at Camp Oasis with friends Sabrina Fugua, Morgan Mercer, Kylie Allred, and Victoria Spruill. Bottom left: Marni (left) with friend Sabrina before leaving camp. Bottom right: Campers enjoying musical activities.

Top: James Lewis, MD, professor of medicine and epidemiology at the Perelman School of Medicine at the University of Pennsylvania. Left: A Mediterranean-style meal full of fresh vegetables, fish, and olive oil.

2018 Friends of the Foundation

2018 Planned Giving: Founders Society

Sed ut perspiciatis, unde omnis iste natus error sit

2018 Research Awards

2018 Friends of the Foundation

Corporate Supporters

2018 Board of Trustees

2018 Research Awards

2018 Friends of the Foundation

2018 Board of Trustees

Corporate Supporters

2018 Planned Giving: Founders Society

Board of Trustees

Key moments from the first annual Crohn’s & Colitis Congress.

A Message from Our Leadership

“In the absence of better data, I have usually recommended the Mediterranean diet to patients, prepared from fresh ingredients, because it has been shown to have other health benefits, such as reducing the risk of heart disease. And there are theoretical reasons why it should work for patients with inflammatory bowel disease,” says Lewis. “The SCD diet was first used many years ago to treat celiac disease, until doctors eventually realized that gluten was the culprit that caused inflammation and symptoms in celiac disease.” There is some preliminary research to suggest that the SCD diet may be helpful in treating inflammatory bowel disease as well.

Corporate Supporters

2018 Planned Giving: Founders Society

Friends Alfasigma U.S.A., Inc. Arena Pharmaceuticals, Inc. Atlanta Attachment Co./Hickory Springs Manufacturing Co. Atlanta Gastroenterology Associates Barnett Capital Bloomberg L.P. Bristol-Myers Squibb Company Capital Digestive Care Capital Group CDM Smith Centerview Partners, LLC Dietz & Watson Foundation The Durst Organization L.P. Edmunds & Associates, Inc. Express Scripts Goldman Sachs Greater Houston Golf Charity Island Operating Company MDC/Richmond American Homes Foundation Med Learning Group Medtronic PlcMeijer, Inc. Metlife Microsoft Corporation Minnesota Gastroenterology, PA Nice-Pak Products Ogletree, Deakins, Nash, Smoak & Stewart, P.C. OptumRx Inc Outsource America, Inc. c/o Leaddog Marketing Group, Inc. Parametric Portfolio Associates Praxis Communications Prometheus Laboratories, Inc., A Nestlé Health Science Company Shire Plc UPMC Valero Services, Inc. The Walmart Foundation Wells Fargo Foundation

2018 Planned Giving: Founders Society

2018 Board of Trustees

Financials

CROHN’S & COLITIS FOUNDATION, INC. Statement of Financial Position As of December 31, 2018, with summarized comparative information for 2017

CROHN’S & COLITIS FOUNDATION, INC. Statement of Activities For the year ended December 31, 2018, with summarized comparative information for 2017

Thanks to the efforts of our dedicated volunteers, step therapy reform passed in Minnesota and Ohio. In 2018, 216 volunteers attended in-person advocacy days in front of Congress (Day on the Hill) and state legislatures.

Corporate Supporters

2018 Planned Giving: Founders Society

2018 Board of Trustees

Financials

Visionaries AbbVie Eli Lilly & Company Janssen Biotech, Inc. Pfizer, Inc. Takeda Pharmaceuticals U.S.A., Inc. Innovators Allergan Plc Boehringer Ingelheim Pharmaceuticals, Inc. Celgene Corporation Pioneers Gilead Sciences, Inc. UCB, Inc. Champions Genentech, Inc. Mortenson Construction Nestlé Health Science Salix Pharmaceuticals UnitedHealth Group

Financials

2018 Board of Trustees

Isabel B. Anderson Amber and Andrew Backhaus Anushree Bag Lois Bailey Arnold Baker Kevin Barnes Gila Belsky and Alexander Modell Grace Benedikt Wendy and Philip Bentlif Mary E. Berry Alicia and Tim Blank Marilyn and Dave Blood Susan and John Borzenski Judi and Phil Boundall Mikel and Bryce Breitenstein Jill Brenneman Larry Britsman Dona M. Browne Rona Budovitch Lander Burr Joan Canfield Susan and Daniel Carr Krista Castell Jennifer Christensen Nancy and Dennis Ciccone Laura Clifford Allison Coffey and Michael Ogrysko Alex Cohen Sue Cohn and Scott Weinstein Becky and Chris Collette Ellen M. Collins Phil Conley Michelle Covington Laura Cridlebaugh Gerald Croan Carolyn and John Crosson Clara and Brian Cruden Betsy and Phil Culberson John Dayton Martha and Dale Delano Vera Deutsch Cathy and Alessandro DiNello Kathryn Dins Rhondell and Glenn Domilici Virginia and Kenneth Dunst Georgette Edkins Irene and Bernard Eizen Ruth and Maury Ettleson Mary Jane Evans Karen M. Findora Amy Finkelstein Alan B. Finn Dean Fiorelli Pattie Moxham-Fisher and Michael Fisher Elise Foland Evelyn Fox Martha S. Frank Richard Frankel William Frankenstein Mary and Timothy Franklin Linda Fraser Michele Freadman Diane Froot Brenda Fudell Patty and Alex Funderburg Arlene Galbert Gary Garfield Robert B. Garman Deborah and Vance Gibbs Annette and Leonard Gilman Deborah P. Goldberg Diane and Donald Goldfarb Steve Goodman Mona M. Gordon Randi B. Gordon Miriam Gottlibb Julie Grable Debbie and Greg Greenberg Marcia Greenburg Davis Lorri Greif Fanny Gruszecki Jill and Michael Hainkel Bruce Hartzmark Mary Sue and Robert Hawk Daniel L. Hawkins Barbara L. Heidecker Paula and Gary Hilbert Deanne Hill Herbert Hirsch Hanna L. Hombordy Nancy and William Homeyer Celia J. Honig Gerald L. Honl Michele Kissous-Hunt and Daniel Hunt Sharon and Sanford Kahn Dawne and Mark Kaufman June Kay Millicent Kellner Beth King Michael Klein and Jeffrey Ward Steve R. Koonin Mary Lou and Don Kortz Julie and Michael Koss Jill and Kurtis Krentz

Renee Landau Eric A. Landau Gloria Langos Patricia LaPedus Judith Ludwig Levine Shelly and Ronald Levy Michael Libys David Linemeyer Lucia A. Loding Adeline Luckman Juanita and Roger Ludke Harvey S. Luterman Rusty Maddox Theodora Mahoney Margaret Marasco Marc Marasco Thomas G. Martin Carolyn Martin Patti M. Masarek Nancy J. McNabb Henry J. Meyer Shelby Modell Tammy and Joe Monk Cynthia and John Monter Noel Moore J. Roger Morrison Martha Morrison Philip S. Muller Charles R. Munsey Barbara and Robert Murray Joan and Mark Murray Marcy and Jeremy Nanus Barbara and Bob Nieder Rose Marie Nilsson Agnes E. Nixon Debra and Peter O'Connor Jeana and Paul Ogren Maria Oliva-Hemker Annclaire Oscar Carole A. Ostroff Sarah-Katharine Owen Gilbert Pallen Renee F. Parente – Kim confirming Santos G. Perez Neil Pessin Oscar E. Peterson Christine Pitt Kathryn Pizza Christine Pollock Evelyn and Mark Pope Robert Van Pulley Rex H. Rathbun Rosalyn C. Richman Carol and Seymour Roberts Robin M. Roger Mona J. Rosenberg Joan and Steve Rosenfeld Susan and Joel Rosh Warren Ross Cynthia L. Roth Carol and Arnold Rudoff Aimee and Frank Russomano Selma P. Ryave Carolyn W. Sampson George J. Saunders Linda Saunders Lisa and Mark Schneider Ronald M. Schwartz Frank Scottie Sally and Larry Sears Carol and Robert Sexton Lanie and Gary Sinderbrand Susan Sivitz Betty Smith George W. Smyth Kim and Scott Snapper Sheldon Sokol John S. Spiecker Pam A. Staats Sylvia D. Steinbrock Bonnie and Andrew Stern Rebecca and Eric Stone Beverly Taubel Jane and Kenneth Thomas John B. Thompson, II Julie Townsend Jeff Tupper Lawrence Vandervoorn Salvatore Varveri Kathryn Vaughan Helene and Joseph Victor Sara Jane and Martin Victor Rene Warren Judith and Arie Weissman Bob Whinehold Ray Whitaker Marilyn and John Whitcher Nancy A. Wiltgen Linda Windsor John W. Wine Mark S. Yanochko Jodi and Charles Yellen Phoebe and Charles Yochim Anonymous (4)

The Crohn’s & Colitis Foundation greatly appreciates the generosity and foresight of individuals who have included the Foundation in their estate planning. If you have made estate plans that include the Foundation and would like to share with us, please contact Allison Coffey, senior vice president of advancement, at 917-476-6511 or acoffey@crohnscolitisfoundation.org.

Isabel B. Anderson Amber and Andrew Backhaus Anushree Bag Lois Bailey Arnold Baker Kevin Barnes Gila Belsky and Alexander Modell Grace Benedikt Wendy and Philip Bentlif Mary E. Berry Alicia and Tim Blank Marilyn and Dave Blood Susan and John Borzenski Judi and Phil Boundall Mikel and Bryce Breitenstein Jill Brenneman Larry Britsman Dona M. Browne Rona Budovitch Lander Burr Joan Canfield Susan and Daniel Carr Krista Castell Jennifer Christensen Nancy and Dennis Ciccone Laura Clifford Allison Coffey and Michael Ogrysko Alex Cohen Sue Cohn and Scott Weinstein Becky and Chris Collette Ellen M. Collins Phil Conley Michelle Covington Laura Cridlebaugh Gerald Croan Carolyn and John Crosson Clara and Brian Cruden Betsy and Phil Culberson John Dayton Martha and Dale Delano Vera Deutsch Cathy and Alessandro DiNello Kathryn Dins Rhondell and Glenn Domilici Virginia and Kenneth Dunst Georgette Edkins Irene and Bernard Eizen Ruth and Maury Ettleson Mary Jane Evans Karen M. Findora Amy Finkelstein Alan B. Finn Dean Fiorelli Pattie Moxham-Fisher and Michael Fisher Elise Foland Evelyn Fox Martha S. Frank Richard Frankel William Frankenstein Mary and Timothy Franklin Linda Fraser Michele Freadman Diane Froot Brenda Fudell Patty and Alex Funderburg Arlene Galbert Gary Garfield Robert B. Garman Deborah and Vance Gibbs Annette and Leonard Gilman Deborah P. Goldberg Diane and Donald Goldfarb Steve Goodman Mona M. Gordon Randi B. Gordon Miriam Gottlibb Julie Grable Debbie and Greg Greenberg Marcia Greenburg Davis Lorri Greif Fanny Gruszecki Jill and Michael Hainkel Bruce Hartzmark Mary Sue and Robert Hawk Daniel L. Hawkins Barbara L. Heidecker Paula and Gary Hilbert Deanne Hill Herbert Hirsch Hanna L. Hombordy Nancy and William Homeyer Celia J. Honig Gerald L. Honl Michele Kissous-Hunt and Daniel Hunt Sharon and Sanford Kahn Dawne and Mark Kaufman June Kay Millicent Kellner Beth King Michael Klein and Jeffrey Ward Steve R. Koonin Mary Lou and Don Kortz Julie and Michael Koss Jill and Kurtis Krentz

Renee Landau Eric A. Landau Gloria Langos Patricia LaPedus Judith Ludwig Levine Shelly and Ronald Levy Michael Libys David Linemeyer Lucia A. Loding Adeline Luckman Juanita and Roger Ludke Harvey S. Luterman Rusty Maddox Theodora Mahoney Margaret Marasco Marc Marasco Thomas G. Martin Carolyn Martin Patti M. Masarek Nancy J. McNabb Henry J. Meyer Shelby Modell Tammy and Joe Monk Cynthia and John Monter Noel Moore J. Roger Morrison Martha Morrison Philip S. Muller Charles R. Munsey Barbara and Robert Murray Joan and Mark Murray Marcy and Jeremy Nanus Barbara and Bob Nieder Rose Marie Nilsson Agnes E. Nixon Debra and Peter O'Connor Jeana and Paul Ogren Maria Oliva-Hemker Annclaire Oscar Carole A. Ostroff Sarah-Katharine Owen Gilbert Pallen Renee F. Parente – Kim confirming Santos G. Perez Neil Pessin Oscar E. Peterson Christine Pitt Kathryn Pizza Christine Pollock Evelyn and Mark Pope Robert Van Pulley Rex H. Rathbun Rosalyn C. Richman Carol and Seymour Roberts Robin M. Roger Mona J. Rosenberg Joan and Steve Rosenfeld Susan and Joel Rosh Warren Ross Cynthia L. Roth Carol and Arnold Rudoff Aimee and Frank Russomano Selma P. Ryave Carolyn W. Sampson George J. Saunders Linda Saunders Lisa and Mark Schneider Ronald M. Schwartz Frank Scottie Sally and Larry Sears Carol and Robert Sexton Lanie and Gary Sinderbrand Susan Sivitz Betty Smith George W. Smyth Kim and Scott Snapper Sheldon Sokol John S. Spiecker Pam A. Staats Sylvia D. Steinbrock Bonnie and Andrew Stern Rebecca and Eric Stone Beverly Taubel Jane and Kenneth Thomas John B. Thompson, II Julie Townsend Jeff Tupper Lawrence Vandervoorn Salvatore Varveri Kathryn Vaughan Helene and Joseph Victor Sara Jane and Martin Victor Rene Warren Judith and Arie Weissman Bob Whinehold Ray Whitaker Marilyn and John Whitcher Nancy A. Wiltgen Linda Windsor John W. Wine Mark S. Yanochko Jodi and Charles Yellen Phoebe and Charles Yochim Anonymous (4)

The Crohn’s & Colitis Foundation greatly appreciates the generosity and foresight of individuals who have included the Foundation in their estate planning. If you have made estate plans that include the Foundation and would like to share with us, please contact Allison Coffey, senior vice president of advancement, at 917-476-6511 or acoffey@crohnscolitisfoundation.org.

2018 Board of Trustees

Isabel B. Anderson Amber and Andrew Backhaus Anushree Bag Lois Bailey Arnold Baker Kevin Barnes Gila Belsky and Alexander Modell Grace Benedikt Wendy and Philip Bentlif Mary E. Berry Alicia and Tim Blank Marilyn and Dave Blood Susan and John Borzenski Judi and Phil Boundall Mikel and Bryce Breitenstein Jill Brenneman Larry Britsman Dona M. Browne Rona Budovitch Lander Burr Joan Canfield Susan and Daniel Carr Krista Castell Jennifer Christensen Nancy and Dennis Ciccone Laura Clifford Allison Coffey and Michael Ogrysko Alex Cohen Sue Cohn and Scott Weinstein Becky and Chris Collette Ellen M. Collins Phil Conley Michelle Covington Laura Cridlebaugh Gerald Croan Carolyn and John Crosson Clara and Brian Cruden Betsy and Phil Culberson John Dayton Martha and Dale Delano Vera Deutsch Cathy and Alessandro DiNello Kathryn Dins Rhondell and Glenn Domilici Virginia and Kenneth Dunst Georgette Edkins Irene and Bernard Eizen Ruth and Maury Ettleson Mary Jane Evans Karen M. Findora Amy Finkelstein Alan B. Finn Dean Fiorelli Pattie Moxham-Fisher and Michael Fisher Elise Foland Evelyn Fox Martha S. Frank Richard Frankel William Frankenstein Mary and Timothy Franklin Linda Fraser Michele Freadman Diane Froot Brenda Fudell Patty and Alex Funderburg Arlene Galbert Gary Garfield Robert B. Garman Deborah and Vance Gibbs Annette and Leonard Gilman Deborah P. Goldberg Diane and Donald Goldfarb Steve Goodman Mona M. Gordon Randi B. Gordon Miriam Gottlibb Julie Grable Debbie and Greg Greenberg Marcia Greenburg Davis Lorri Greif Fanny Gruszecki Jill and Michael Hainkel Bruce Hartzmark Mary Sue and Robert Hawk Daniel L. Hawkins Barbara L. Heidecker Paula and Gary Hilbert Deanne Hill Herbert Hirsch Hanna L. Hombordy Nancy and William Homeyer Celia J. Honig Gerald L. Honl Michele Kissous-Hunt and Daniel Hunt Sharon and Sanford Kahn Dawne and Mark Kaufman June Kay Millicent Kellner Beth King Michael Klein and Jeffrey Ward Steve R. Koonin Mary Lou and Don Kortz Julie and Michael Koss Jill and Kurtis Krentz

Renee Landau Eric A. Landau Gloria Langos Patricia LaPedus Judith Ludwig Levine Shelly and Ronald Levy Michael Libys David Linemeyer Lucia A. Loding Adeline Luckman Juanita and Roger Ludke Harvey S. Luterman Rusty Maddox Theodora Mahoney Margaret Marasco Marc Marasco Thomas G. Martin Carolyn Martin Patti M. Masarek Nancy J. McNabb Henry J. Meyer Shelby Modell Tammy and Joe Monk Cynthia and John Monter Noel Moore J. Roger Morrison Martha Morrison Philip S. Muller Charles R. Munsey Barbara and Robert Murray Joan and Mark Murray Marcy and Jeremy Nanus Barbara and Bob Nieder Rose Marie Nilsson Agnes E. Nixon Debra and Peter O'Connor Jeana and Paul Ogren Maria Oliva-Hemker Annclaire Oscar Carole A. Ostroff Sarah-Katharine Owen Gilbert Pallen Renee F. Parente – Kim confirming Santos G. Perez Neil Pessin Oscar E. Peterson Christine Pitt Kathryn Pizza Christine Pollock Evelyn and Mark Pope Robert Van Pulley Rex H. Rathbun Rosalyn C. Richman Carol and Seymour Roberts Robin M. Roger Mona J. Rosenberg Joan and Steve Rosenfeld Susan and Joel Rosh Warren Ross Cynthia L. Roth Carol and Arnold Rudoff Aimee and Frank Russomano Selma P. Ryave Carolyn W. Sampson George J. Saunders Linda Saunders Lisa and Mark Schneider Ronald M. Schwartz Frank Scottie Sally and Larry Sears Carol and Robert Sexton Lanie and Gary Sinderbrand Susan Sivitz Betty Smith George W. Smyth Kim and Scott Snapper Sheldon Sokol John S. Spiecker Pam A. Staats Sylvia D. Steinbrock Bonnie and Andrew Stern Rebecca and Eric Stone Beverly Taubel Jane and Kenneth Thomas John B. Thompson, II Julie Townsend Jeff Tupper Lawrence Vandervoorn Salvatore Varveri Kathryn Vaughan Helene and Joseph Victor Sara Jane and Martin Victor Rene Warren Judith and Arie Weissman Bob Whinehold Ray Whitaker Marilyn and John Whitcher Nancy A. Wiltgen Linda Windsor John W. Wine Mark S. Yanochko Jodi and Charles Yellen Phoebe and Charles Yochim Anonymous (4)

The Crohn’s & Colitis Foundation greatly appreciates the generosity and foresight of individuals who have included the Foundation in their estate planning. If you have made estate plans that include the Foundation and would like to share with us, please contact Allison Coffey, senior vice president of advancement, at 917-476-6511 or acoffey@crohnscolitisfoundation.org.

Board of Trustees

Financials

2018 Planned Giving: Founders Society

Isabel B. Anderson Amber and Andrew Backhaus Anushree Bag Lois Bailey Arnold Baker Kevin Barnes Gila Belsky and Alexander Modell Grace Benedikt Wendy and Philip Bentlif Mary E. Berry Alicia and Tim Blank Marilyn and Dave Blood Susan and John Borzenski Judi and Phil Boundall Mikel and Bryce Breitenstein Jill Brenneman Larry Britsman Dona M. Browne Rona Budovitch Lander Burr Joan Canfield Susan and Daniel Carr Krista Castell Jennifer Christensen Nancy and Dennis Ciccone Laura Clifford Allison Coffey and Michael Ogrysko Alex Cohen Sue Cohn and Scott Weinstein Becky and Chris Collette Ellen M. Collins Phil Conley Michelle Covington Laura Cridlebaugh Gerald Croan Carolyn and John Crosson Clara and Brian Cruden Betsy and Phil Culberson John Dayton Martha and Dale Delano Vera Deutsch Cathy and Alessandro DiNello Kathryn Dins Rhondell and Glenn Domilici Virginia and Kenneth Dunst Georgette Edkins Irene and Bernard Eizen Ruth and Maury Ettleson Mary Jane Evans Karen M. Findora Amy Finkelstein Alan B. Finn Dean Fiorelli Pattie Moxham-Fisher and Michael Fisher Elise Foland Evelyn Fox Martha S. Frank Richard Frankel William Frankenstein Mary and Timothy Franklin Linda Fraser Michele Freadman Diane Froot Brenda Fudell Patty and Alex Funderburg Arlene Galbert Gary Garfield Robert B. Garman Deborah and Vance Gibbs Annette and Leonard Gilman Deborah P. Goldberg Diane and Donald Goldfarb Steve Goodman Mona M. Gordon Randi B. Gordon Miriam Gottlibb Julie Grable Debbie and Greg Greenberg Marcia Greenburg Davis Lorri Greif Fanny Gruszecki Jill and Michael Hainkel Bruce Hartzmark Mary Sue and Robert Hawk Daniel L. Hawkins Barbara L. Heidecker Paula and Gary Hilbert Deanne Hill Herbert Hirsch Hanna L. Hombordy Nancy and William Homeyer Celia J. Honig Gerald L. Honl Michele Kissous-Hunt and Daniel Hunt Sharon and Sanford Kahn Dawne and Mark Kaufman June Kay Millicent Kellner Beth King Michael Klein and Jeffrey Ward Steve R. Koonin Mary Lou and Don Kortz Julie and Michael Koss Jill and Kurtis Krentz

Financials

AbbVie Alfasigma U.S.A., Inc. Allergan Plc Arena Pharmaceuticals, Inc. Boehringer Ingelheim Pharmaceuticals, Inc. Celgene Corporation Daiichi Sankyo, Inc. Eli Lilly and Company Genentech, Inc.

President’s Corporate Circle

National Event Supporters

Team Challenge: AbbVie Medtronic Plc. Pfizer, Inc. Shire Plc Takeda Pharmaceuticals U.S.A, Inc. UCB, Inc. spin4 crohn’s & colitis cures: AbbVie Takeda Pharmaceuticals U.S.A., Inc. UCB, Inc.

AbbVie Alfasigma U.S.A., Inc. Allergan Plc Arena Pharmaceuticals, Inc. Boehringer Ingelheim Pharmaceuticals, Inc. Celgene Corporation Daiichi Sankyo, Inc. Eli Lilly and Company Genentech, Inc.

President’s Corporate Circle

National Event Supporters

Team Challenge: AbbVie Medtronic Plc. Pfizer, Inc. Shire Plc Takeda Pharmaceuticals U.S.A, Inc. UCB, Inc. spin4 crohn’s & colitis cures: AbbVie Takeda Pharmaceuticals U.S.A., Inc. UCB, Inc.

President’s Corporate Circle

National Event Supporters

Media Partners Outcome Health Reach MD

President’s Corporate Circle

National Event Supporters

Team Challenge: AbbVie Medtronic Plc. Pfizer, Inc.Shire, Plc.Takeda Pharmaceuticals U.S.A, Inc. UCB, Inc. spin4 crohn’s & colitis cures: AbbVie Takeda Pharmaceuticals U.S.A., Inc. UCB, Inc.

AbbVie Alfasigma U.S.A., Inc. Allergan Plc Arena Pharmaceuticals, Inc. Boehringer Ingelheim Pharmaceuticals, Inc. Celgene Corporation Daiichi Sankyo, Inc. Eli Lilly and Company Genentech, Inc.

Financials

Board of Trustees

Financials

CROHN’S & COLITIS FOUNDATION, INC. Statement of Financial Position As of December 31, 2018, with summarized comparative information for 2017

CROHN’S & COLITIS FOUNDATION, INC. Statement of Activities For the year ended December 31, 2018, with summarized comparative information for 2017

The accompanying notes are an integral part of this financial statement.