2016 Annual Report

Uniting to Care & Cure

2016 Annual Report

Table of Contents As part of a comprehensive strategic planning process in 2016, the Foundation engaged IBD stakeholders for a rebranding initiative designed to ensure that the “face” we show to the world accurately reflects who we are, what we represent, and the role we play in the IBD community today.

Creating the Right Roadmap...................................................................................................................................... 2

• Abbreviated Name We’ve simplified our name and dispensed with an acronym to put an even brighter focus on our mission targets: Crohn’s disease and ulcerative colitis. By keeping the ampersand and a related yet modern font and color, our abbreviated name, the Crohn’s & Colitis Foundation, maintains continuity with the past while expressing our evolution as a leader in the IBD community.

Walk, Swim, Run, or Cycle: IBD Community Unites Behind Our Mission.......................................... 8

• Logo We’ve included a five-pointed star in the upper right of our logo to represent the Foundation’s joining together of diverse stakeholders and our linked strategies to catalyze innovation and achieve forward-focused objectives. The dynamic symbol embodies the passion and energy we bring to all aspects of our work.

• Message The Foundation’s new brand message is “Uniting to Care and Cure.” This welcoming, hopeful phrase encompasses our two-pronged mission, to cure IBD and care for those impacted by the diseases, as well as our fundamental strategy: uniting every stakeholder in the IBD community to achieve our shared goals.

Chapter 1: Uniting............................................................................................................................................................ 4 Battling the Rising Costs of IBD Care............................................................................................................... 6

Chapter 2: Care................................................................................................................................................................. 10 Improving Care, Enhancing Lives: IBD Qorus™ Focuses on Quality of Care.................................. 12 Diet & Nutrition in IBD: Innovative Research Promises New Treatment Options........................ 14 Managing Care: New Education Resources Empower and Support IBD Patients....................... 16 Chapter 3: Cure................................................................................................................................................................. 18 RISK Study Announces Breakthrough Discoveries.................................................................................... 20 A Parent’s Story.......................................................................................................................................................... 22 Understanding the Role of Environmental Triggers in IBD..................................................................... 24 New Adult Study Is a Key Cohort of IBD Plexus®..................................................................................... 26 Research Awards............................................................................................................................................................. 28 Friends of the Foundation........................................................................................................................................... 38 Corporate Supporters................................................................................................................................................... 42 Planned Giving: Founders Society........................................................................................................................... 44 2016 Financial Statements......................................................................................................................................... 48 2016 National Board of Trustees............................................................................................................................. 52

www.crohnscolitisfoundation.org info@crohnscolitisfoundation.org 800-932-2423

Fiscal 2016: January 1, 2016–December 31, 2016 ACCREDITED CHARITY

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Creating the Right Roadmap 2016 was an extraordinary year for the Crohn’s & Colitis Foundation. Our unique role as a “hub” for the IBD community has never been more crucial to improving lives and advancing cures. We’re justifiably proud of our many achievements on behalf of IBD patients and their caregivers—our ground-breaking collaborations and research initiatives, innovative and empowering education and support programs, and fierce advocacy for every child and adult with IBD. But one of the most essential initiatives we completed last year was more behind-the-scenes in comprehensive, strategic planning to create our roadmap for the next three years. The process required us to come together to reidentify who and what we are as well as what we want to be.

We had to articulate a coherent and inspiring vision, but also look hard at what can and should be accomplished in the next 36 months. The result—an ambitious, all-embracing plan—energizes and emboldens us for the work ahead.

The breadth and rigor of our strategic planning was considerable, and an unprecedented experience for us. It succeeded because we took the time to invite every stakeholder to join and help inform the process. This included academic and industry researchers, other successful nonprofit health organizations, healthcare providers and insurers, and, most important, patients and caregivers. We are increasingly engaging and uniting patients, doctors, and researchers to gain their input, guidance and collaboration. Patients are always reminding us what’s important.

By taking the time to create a strategic plan that incorporates the ideas and feedback of all IBD stakeholders, we’re fueling an acceleration toward new, more effective treatments, and an expansion of our efforts to improve patient quality of life. Our new brand and logo express our hopefulness and unwavering commitment to those goals.

As the Foundation celebrates its half-century of leadership in the IBD community in 2017, we’ve never been more confident that we’re on the right path. We are accelerating advancements toward cures, while doing all we can to support and care for patients today. To all of you who join us with your passion and support, thank you.

From our Leadership

Vance A. Gibbs Chair of the Board

Michael Osso President & CEO

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Chapter 1: Uniting The Crohn’s & Colitis Foundation acts as a hub for the IBD community, a place where multiple stakeholders unite to do whatever it takes to improve patients’ quality of life and advance research toward cures. The Foundation plays a unique and critical role as convener and catalyst, bringing together and inspiring IBD researchers, doctors, donors, advocates, patients and caregivers to work with us, and each other, to inform our priorities and support our mission.

The Foundation sponsors and participates in professional meetings, large and small, held around the world. Our own annual professional conference brings together top medical professionals from a variety of IBD-related fields to share knowledge and learn from each other’s work. In addition, our carefully crafted research strategy is informed by leading investigators from around the globe, who help us identify the most promising avenues of inquiry that will lead to accelerating new treatment development.

Key initiatives of the Foundation are based on diverse and innovative partnerships that are breaking new ground to achieve key mission objectives. Partnership is a core value of the Foundation, embedded in the way we design and build every program from research, to fundraising, to patient education and support. Our most vital partners are patients: we incorporate their voices and perspectives in all our initiatives.

• Our national quality of care program, IBD Qorus™, is developing tools and strategies that empower patients to co-partner with their doctors to better manage and enhance their care.

• In our IBD Partners initiative (previously known as CCFA Partners), academic researchers are working with patients who are providing self-reported data about their disease experience and the day-to-day effects of treatment and diet. This patient-powered research network is yielding discoveries that are most important to patients because they’re focused on improving their quality of life.

Uniting to Care & Cure

• Work began last year on the Foundation’s Clinical Trials Community, which unites gastroenterology professionals, patients, and researchers to increase clinical trial education and awareness, and improve efficiencies and enrollment.

Since it was established by a group of volunteers in 1967, the Crohn’s & Colitis Foundation has been a respected leader in the IBD community. We engage, unite, and partner with every constituency impacted by IBD, because we know that we can achieve our mission only by working together. Our unique role and strength are based on that position as the unifying hub for and among these groups. We’re powered by their shared desire to help patients with IBD and achieve our vision of a world free of Crohn’s disease and ulcerative colitis.

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It is roughly estimated that the annual financial burden on U.S. patients with Crohn’s disease and ulcerative colitis exceeds $31 billion.

Battling the Rising Costs of IBD Care Last year, the Crohn’s & Colitis Foundation organized and participated in a congressional briefing on the rising costs of care for patients living with chronic illnesses. The widely attended event, including more than 40 congressional offices from both sides of the aisle, featured testimony from an IBD patient and was a highlight of the Foundation’s expanded advocacy efforts in 2016. It was hosted by the Coalition for Accessible Treatments (CAT), a collaboration of nonprofit organizations working to ensure all Americans have access to life-changing and life-saving medications.

More than 133 million Americans live with at least one chronic condition, and the treatment of such conditions, including IBD, can include expensive specialty medications. High out-of-pocket costs and other barriers can also prevent patients with chronic diseases from getting the treatment they need. It is roughly estimated that the annual financial burden on U.S. patients with Crohn’s disease and ulcerative colitis exceeds $31 billion.

Advocacy is one component of the Foundation’s efforts to address the challenges so critical to patients. Through our advocacy program, we’re raising awareness, collaborating with patients and healthcare providers, and forming partnerships with national and state legislators to shine a bright light on rising healthcare costs and the harsh impact on patients and their caregivers.

Our focus on lowering the cost of IBD care and protecting patients’ access to providers, treatments, and diagnostics enhances the lives of every individual and family member coping with these diseases.

A Patient’s Story Foundation volunteer and Crohn’s patient Jaime Weinstein (pictured at left) shared her troubling experience with the high costs of care at a congressional briefing last year hosted by the Coalition for Accessible Treatments (CAT).

From left: Jaime Weinstein, Sarah Buchanan, Vivian Weinstein, Robert Territo, Laura Wingate, and Matt Leavitt, DO, FAOCD, at the Foundation’s annual “IBD Day on the Hill.”

“I never imagined losing my job, my home, my possessions, and moving back in with my parents in my 30s, but that’s what happened as a result of having multiple chronic illnesses.

I’ve accrued more than $20,000 in medical debt from countless doctor appointments and expensive medications and procedures. I’m on disability, which means I can barely make a dent in paying off that debt.

“I know that I am not alone in this. We need to take action through legislation and other initiatives to reduce the cost of being sick in the United States. And we need to help patients like myself to alleviate some of the financial burden and crushing debt we’re forced to take on to receive life-saving care.”

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Walk, Swim, Run, or Cycle: IBD Community Unites Behind Our Mission The Crohn’s & Colitis Foundation sponsors a variety of events around the country that support and educate patients and their caregivers, while building awareness of IBD and raising critical dollars to fuel our mission. Our community events are an important way in which we unite multiple IBD stakeholders behind common goals.

The Foundation’s network of 38 chapters around the country, each guided by its own volunteer board, engages patients, their families and caregivers, healthcare providers, and researchers at the local level, and inspires them to raise much-needed funds to make a difference for IBD patients nationwide. Together, these national programs raised $16.8 million last year to fuel our mission.

• Take Steps is our fundraising walk program that held 124 events in 41 states in 2016.

More than 40,000 individuals and 230 corporate partners walked and raised funds to support important research efforts and patient programs.

• Team Challenge, our endurance-training program, involved 1,312 participants last year.

They ran, swam, and cycled their way to improved fitness, while raising critical funding to support our initiatives.

• spin4 crohn’s & colitis cures is our popular indoor cycling relay that has been expanding rapidly in cities throughout the country. During 2016, more than 1,100 participants had fun challenging themselves and each other, while learning about the Foundation’s work.

Together, these national programs raised $16.8 million last year to fuel our mission.

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Chapter 2: Care The Crohn’s & Colitis Foundation’s mission has two core components: our deep commitment to scientific research designed to cure IBD; and, equally important, our programs focused on improving the quality of life of children and adults affected by these diseases.

Our compassion for IBD patients drives everything we do to build awareness, advocate for, and educate and support patients and their caregivers. There are some effective treatments for IBD, but patients and healthcare providers need trusted information to understand their options and make critical choices.

• Through publications, social media, websites, and other online resources, the Foundation provides the latest information, tools, and strategies to educate patients about their disease and how to best manage it through shared decision-making with their healthcare providers.

• Through online, interactive opportunities and face-to-face meetings, we’re providing emotional support that encourages and empowers patients to do all they can to heal and thrive.

• Our well-regarded education and training programs for healthcare professionals at all levels help to ensure that doctors and other clinical staff have the knowledge and skills they need to provide proven and effective IBD care.

In recent years, the Foundation has increasingly focused on the quality of IBD care, expanding our collaboration with clinical providers around the country to identify treatments and care processes that lead to the best health outcomes for patients. We’re also investing more in our advocacy efforts in Washington, D.C., as well as locally, with state-based outreach and public policy initiatives. These activities take on even greater urgency in our rapidly shifting healthcare environment.

Uniting to Care & Cure

While we have our eyes laser-focused on future cures for Crohn’s disease and ulcerative colitis, the Foundation is making a positive difference in the lives of individuals with IBD today.

Our commitment to improving patient quality of life—our promise to care—has never been stronger. e, and disseminate data for research. Components are designed to work together, ensuring that the initiative’s “whole” is vastly greater than the sum of its parts.

Data and information from several existing CCFA initiatives, as well as from a new adult clinical cohort,

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The heart of the initiative empowers shared decision-making between patients and their doctors.

Improving Care, Enhancing Lives: IBD Qorus™ Focuses on Quality of Care In May of 2016, the Crohn’s & Colitis Foundation announced the launch of IBD Qorus™, a national initiative that engages patients and their healthcare providers to improve quality of care and enhance health outcomes for all IBD patients. The heart of the initiative empowers shared decision-making between patients and their doctors. Clinicians at 30 gastroenterology practices throughout the country are currently participating, with widespread expansion slated over the next five years.

IBD Qorus is focused on how care is delivered. Providers in its network are encouraged to share ideas and report quality metrics to a common platform. This information then allows them to compare patient experiences and treatment outcomes over time and across a variety of care settings. Participating clinicians receive feedback and learn from one another how to optimize their delivery of IBD care.

• Patient-centricity: Four volunteer Patient Leaders are playing a key role in the development and implementation of IBD Qorus, providing critical input and guidance to help create the initiative’s model of patient/provider co-facilitation in IBD treatment.

• Targeting Quality: What we already know about improving IBD health outcomes too often fails to influence or improve day-to-day clinical practice. To bridge the gap between evidence-based medicine and its practical application to care delivery, IBD Qorus creates a structure within which participants can easily learn from each other, as well as from recognized experts, in critical areas. In 2016, we focused on strategies to reduce emergency care through better education and optimization of current care processes, improvements that impact every IBD patient.

• Standardizing Optimal Care: IBD Qorus is also identifying optimal processes or “care pathways” (a structured clinical sequence of events) for specific issues relating to the treatment of IBD. Experts in clinical pathway formation helped to articulate pathway guidelines and parameters, which were then tested and refined at IBD Qorus sites. During 2016, care pathways were developed for nutrition and anemia, which are now in use at participating sites.

Gil Melmed, MD, moderates an IBD Qorus™ multi-team meeting.

• Sharing Knowledge to Spread Impact: Findings from the IBD Qorus team were shared with thousands of medical professionals through the Foundation’s professional conference and medical journals. IBD Qorus-generated data and findings will contribute to the development of healthcare policies and strategies improving IBD care nationwide. The result will be greater efficiencies and value in IBD healthcare management.

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Diet & Nutrition in IBD: Innovative Research Promises New Treatment Options The Crohn’s & Colitis Foundation sponsors a diverse and growing body of research and other initiatives that are advancing our understanding of the critical role of diet in IBD. The result of patient-based studies, our outcomes promise new and more effective dietary therapies to improve health outcomes and enhance the quality of life for every patient. We’re also committed to addressing gaps in knowledge related to nutrition and IBD, and to providing patients and their healthcare providers with science-based information about how proper nutrition can have significant impact on a patient’s quality of life.

Says Caren A. Heller, MD, MBA, the Foundation’s Chief Scientific Officer, “Determining how diet affects the teeming universe of bacteria, viruses and fungi inhabiting the human gut—and in turn affects the course of IBD—has major implications for our efforts to improve the quality of life for patients and families affected by Crohn’s and colitis. Our current studies have tremendous potential to inform the development of novel and alternative therapies that address the causes, as well as the symptoms, of IBD.” Patient-Powered Research: In 2016, the Foundation was awarded $2.5 million from the Patient-Centered Outcomes Research Institute (PCORI) to conduct the first-ever national study of dietary interventions in patients with Crohn’s disease. Inspired by an IBD patient through Partners, our patient-powered research network, we initiated collaboration between researchers and patients to study the effectiveness of the specific carbohydrate diet and Mediterranean-style diet in inducing symptomatic and clinical remission of active disease. The study’s outcomes can open the door to more holistic treatment of Crohn’s disease, and will provide the high-quality, data-based guidance needed to incorporate diet recommendations into IBD treatment.

Addressing Malnutrition in IBD: We know that malnutrition is common in IBD patients, and that identifying the estimated 30% of patients who are malnourished or at risk for malnutrition could lead to earlier interventions and improved health outcomes. But few patients report routinely talking with their provider about nutrition, and less than half of all providers feel that they have access to adequate care resources to help initiate and guide nutrition discussions with their IBD patients. To address these gaps, in 2016 our national quality of care initiative, IBD Qorus, launched a new program that collaborates with healthcare providers around the country to develop a proven clinical care pathway that will identify and provide treatment options for patients at risk of malnutrition. Results of the study will contribute to the development of nutrition healthcare policies and strategies to enhance quality of IBD care across the country.a"

Identifying the estimated 30% of patients at risk for malnutrition could lead to earlier interventions and improved health outcomes.

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John Wysocki, MD, lectures on “Biologics & Biosimilars” at the Connecticut Patient & Family IBD Symposium.

We ensure our educational resources are patient-centric by engaging a dynamic group of patients and caregivers.

Managing Care: New Education Resources Empower and Support IBD Patients The Crohn’s & Colitis Foundation provides IBD patients and their caregivers with unbiased, up-to-the-minute information about the science behind Crohn’s disease and ulcerative colitis, as well as a diverse range of resources and strategies to help patients of all ages better understand and manage their chronic disease. We ensure our educational resources are patient-centric by engaging a dynamic group of patients and caregivers on our Patient and Pediatric Education and Advisory committees. These committed volunteers participate in every step of the development, review, and dissemination of our educational resources, helping to ensure we’re using the best modality for our targeted audiences, and that resources address a variety of different learning styles and preferences.

We also regularly survey the broader landscape of IBD educational resources and conduct needs assessments to identify areas where new resources are needed or older resources need updating. During 2016, we filled several gaps revealed by our most recent assessment by providing two new resources designed to help IBD patients become knowledgeable and more capable of managing their disease for the best health outcomes.

Colorectal Cancer Education & Awareness Campaign: Patients with IBD involving the colon should be aware of the colorectal cancer screening guidelines and vigilant about being tested accordingly. To promote these goals, we created a new website landing page that houses a variety of resources delivered across multiple modalities, including a short animated video about colorectal cancer, information about prevention and diagnosis, fact sheets, graphics, an archived webinar, and a quiz for users to test their knowledge.

Pediatric Empowerment Campaign: Children and young adults with IBD need to acquire the self-management skills necessary to care for themselves and effectively manage their chronic disease as independent adults. Last year, the Foundation focused on the particular issues facing young patients with a campaign designed to help them develop age-appropriate skills, including knowledge about their disease, understanding and taking responsibility for medications, arranging their own doctor and other care appointments, and lifestyle factors that can impact symptoms. In addition to an animated video, infographic, and a quiz for pediatric patients, resources included a discussion guide for parents and guardians. ring that the initiative’s “whole” is vastly greater than the sum of its parts.

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Chapter 3: Cure Investing in academic research to cure IBD has always been core to the Crohn’s & Colitis Foundation’s mission. We’ve been an important catalyst in every major advance in the science of IBD since our inception. At the Foundation, we are first and foremost committed to every child and adult battling IBD. The patient drives our unrelenting focus on doing whatever it takes to improve his or her life. That’s why our strategic research priority is to identify smart, attainable milestones that advance the science most likely to lead to new IBD treatments and cures.

The Foundation’s unique role at the heart of the IBD community allows us to foster research that incorporates multiple stakeholder groups and enables inquiry across different scientific and medical fields. No other organization has that capacity in quite the same way. Our new IBD Plexus® initiative, for example, is designed to bring together vast amounts of varied types of data from several IBD patient cohorts. The initiative’s unprecedented data storage, management and analysis capacities will allow IBD researchers to design novel studies that compare and analyze this previously siloed information to advance our understanding of IBD. The Foundation’s research initiatives build on and inform each other, yielding fresh insights and opening doors to yet more promising avenues of investigation. Scientific advances made over the past decade by the Foundation’s Microbiome and Genetics initiatives, for example, helped to enable our pediatric RISK study’s recent breakthrough discoveries. Such strategic research investments continuously reveal new questions and study opportunities that will further advance our understanding of what causes IBD onset and progression, and the best treatment options for individual patients.

Together with our scientific and clinical partners, IBD patients and their caregivers, and the tens of thousands of individuals and organizations who support the Crohn’s & Colitis Foundation, we are on the right road to a cure for IBD. Along the way, our research is yielding critical discoveries and making a significant and positive difference in patients’ lives right now.

We’re excited by this very real progress, and inspired to do even more to improve their health and lives.

Uniting to Care & Cure

ng that the initiative’s “whole” is vastly greater than the sum of its parts.

Data and information from several existing CCFA initiatives, as well as from a new adult clinical cohort, will be incorporated and integrated to create the largest registry of IBD patients of all ages

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One in four children with Crohn’s disease progress to complicated disease behaviors, including stricturing and penetrating disease.

Predicting Complications for Children with Crohn’s Disease: RISK Study Announces Breakthrough Discoveries Most children diagnosed with Crohn’s disease exhibit a relatively mild disease course that responds well to available treatments, but one in four rapidly progress to complicated disease behaviors, including stricturing and penetrating disease, which account for substantial morbidity and healthcare costs in both pediatric and adult patients. These children experience a more severe disease course, with growth failure, pubertal delay, continued active gastrointestinal symptoms, and impaired quality of life.

During 2016, scientists sponsored by the Crohn’s & Colitis Foundation announced new discoveries from our Pediatric RISK Stratification Study (RISK), which is designed to identify the clinical, genetic, microbiological, and immunological factors in children that are predictive of more severe IBD. Collaborating investigators at 28 institutions throughout the U.S. and Canada reported exciting progress in developing a validated model to assess an individual child’s risk for Crohn’s disease complications within three to five years of diagnosis—critical knowledge that will help parents and clinicians make the best therapeutic decisions.

RISK investigators also reveal new information about the effectiveness of early treatment with a biologic drug known as anti-tumor necrosis alpha (anti-TNF-a) antibody for children at risk of severe Crohn’s disease. Their findings advance a potential approach to precision, or individualized, medicine for pediatric patients that will enhance their care and improve the quality of their lives.

The RISK cohort is comprised of the largest, well-characterized group of pediatric patients in the history of Crohn’s disease research. More than 1,800 patients, ages 6 to 17, were recruited at disease onset and 913 are being prospectively followed for complications and response to therapies.

ing that the initiative’s “whole” is vastly greater than the sum of its parts.

Data and information from several existing CCFA initiatives, as well as from a new adult clinical cohort, will be incorporated and integrated to create the largest registry of IBD patients of all ages

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A Parent’s Story Theresa’s son, Steven, was diagnosed with severe Crohn’s disease at age 10. This is her story: “Steven was completely healthy when he left for school that morning, but by the time he returned in the afternoon he was feeling tired and bleeding. We thought it was just a stomach virus, but he didn’t get better. And, he wasn’t talking… just tired and listless. I knew my son, and if he wasn’t talking, something was seriously wrong.

“He was hospitalized almost immediately, and within a week, diagnosed with severe Crohn’s disease. Within three weeks, he’d lost 30 pounds. It was a very aggressive onset and they weren’t sure Steven would survive. Ultimately, his colon was removed and he’s been living with an ostomy ever since.

“It was a devastating time for Steven, and for our family. My job as a parent is to help my child navigate the world with tenacity and integrity. But Crohn’s was suddenly this huge obstacle in my son’s life, and I felt frightened for him and helpless—though helplessness wasn’t really an option.

“Even as a 10-year-old, Steven was filled with fortitude. He wanted his life back, and he’s succeeded for the most part. Attending the Foundation’s Camp Oasis helped, because he got to spend time with other kids with the same challenges, who are nonetheless thriving. The Foundation provides positive role models for me, too, in the incredibly strong and supportive parents I’ve met at family events and other gatherings of patients and their caregivers.

“Against Crohn’s, I felt powerless and didn’t know how to proceed. But what the Crohn’s & Colitis Foundation gives me is an avenue for my desire to fight this terrible disease and break through to a cure. It connects me with others who have the same passion, and channels our united strength to make a real impact. It inspires me with hopefulness for Steven, and every person coping with IBD.” and disseminate data for research. Components are designed to work together, ensuring that the initiative’s “whole” is vastly greater than the sum of its parts.

“ What the Crohn’s & Colitis Foundation gives me is an avenue for my desire to fight this terrible disease and break through to a cure.”

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The rapid rise of IBD incidence in newly westernized countries suggests that environmental factors play a key role.

Understanding the Role of Environmental Triggers in IBD While science has established the importance of genetic susceptibility in Crohn’s disease and ulcerative colitis, the fact remains that some individuals genetically at risk for IBD do not develop the disease, while others do. Why is that? The rapid rise of IBD incidence in newly westernized countries suggests that environmental factors may play a key role.

To explore these issues, in November of 2016, the Crohn’s & Colitis Foundation launched an Environmental Triggers Initiative with a daylong forum that featured presentations from thought leaders—both inside and outside the IBD community—on topics including antibiotics, viruses, stress, diet, and pollutants. The forum, “Environmental and Epigenetic Determinants of IBD,” brought together scientists from diverse fields to share knowledge and learn from each other. Their discussions revealed new insights on the possible role of environmental triggers in IBD, and will guide development of our roadmap to drive strategic research investments in this area.

Leonard Baidoo, MD, discusses “Environmental Triggers and IBD” at the Illinois Chapter’s Patient Education Program.

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New Adult Study Is a Key Cohort of IBD Plexus® In 2016, the Foundation’s IBD Plexus® initiative completed the second year in its three-year build phase, and reached a significant milestone with the launch of a new multi-centered longitudinal study of adult IBD patients. When fully enrolled, “Study of a Prospective Adult Research Cohort with IBD” (SPARC) will follow 7,000 well-characterized (phenotyped) adult patients, aged 18 years or older, integrating their clinical data and self-reported outcome data, and collecting serial biosamples over the course of their disease. SPARC patient data and biological samples will be used for basic, translational, and clinical research to open the door to the development of precision medicine strategies and new therapeutic targets to improve patients’ quality of life.

Slated for launch in 2018, IBD Plexus will be the largest and most innovative research and information exchange platform ever created for IBD. It is being implemented with generous funding from the Leona M. and Harry B. Helmsley Charitable Trust. In addition, innovative partnerships with industry support key components of the initiative.

IBD Plexus will be enriched by the Foundation’s major cohort-based initiatives, and include adult (SPARC) and pediatric (RISK) patient registries, a biobank, a quality of care improvement program (IBD Qorus™), a patient-powered research network (IBD Partners), and a researcher portal. It incorporates a variety of patient data and uses powerful information management and analysis capabilities to transform the way IBD research is being conducted. It will enable novel studies that accelerate development of better diagnostics, treatments, and, ultimately, cures for Crohn’s disease and ulcerative colitis.

SPARC patient data and samples will be used for research to open the door to the development of precision medicine strategies.

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Research Awards For 50 years, the Crohn’s & Colitis Foundation has been funding only the highest-quality research. We have worked tirelessly to build a diverse portfolio of individual and collaborative research projects in high-priority areas. With nearly 1,600 grants awarded and an investment of more than $298 million, the Foundation has played a role in nearly every major scientific breakthrough in IBD. Each year, our National Scientific Advisory Committee (NSAC) peer reviews hundreds of investigator-initiated grant applications, a process modeled after that of the National Institutes of Health. Grants are awarded on the basis of scientific merit, relevance to IBD, and qualifications of the investigator and research environment. In 2016, we provided support for 200 grants at some of the most respected research institutions in the United States and around the world. These awards fall into four categories: Senior Research Awards, Career Development Awards, Research Fellowship Awards, and Initiatives. The Broad Medical Research Program at the Crohn’s & Colitis Foundation also funded innovative pilot research so scientists can test novel ideas even before they have generated preliminary data.

Research Initiatives are developed to fill important unmet needs in IBD research. They are idea-driven projects that bring together multiple centers and investigators from across the country to work with an agreed-upon focus and to share outcomes. The goal is to discover and support emerging areas of research that could impact the scientific community’s understanding of the causes of and potential cures/treatments for IBD. Our current initiatives include Microbiome, Genetics, Pediatric Risk Stratification, IBD Partners, IBD Qorus™, and IBD Plexus®.

Our research is unprecedented and has significant potential to directly transform IBD patients’ well-being. Science has become a team sport, and the Foundation is leading the way by fostering collaboration across all channels in order to accelerate the research process. We are incredibly proud of the work our researchers do each and every day.

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The Crohn’s & Colitis Foundation is pleased to acknowledge the following investigators who were recognized for their outstanding contribution to advancing our knowledge of IBD. Henry D. Janowitz, MD Lifetime Achievement Award Bruce E. Sands, MD Icahn School of Medicine at Mount Sinai New York, NY Scientific Achievement in IBD Clinical Research Award James D. Lewis, MD, MSCE University of Pennsylvania Perelman School of Medicine Philadelphia, PA Scientific Achievement in IBD Basic Research Award Thaddeus S. Stappenbeck, MD, PhD Washington University in St. Louis School of Medicine St. Louis, MO IBD Journal Editorial Board Senior Research Award Meenakshi Bewtra, MD University of Pennsylvania Philadelphia, PA Crohn’s disease patient and provider riskbenefit preferences for medical therapies

IBD Journal Editorial Board Senior Research Award James Casanova, PhD University of Virginia Charlottesville, VA Regulation of mucosal epithelial homeostasis and repair by focal adhesion kinases IBD Journal Editorial Board Research Fellowship Award Weston Whitaker, PhD Stanford University Palo Alto, CA Defining single-cell responses to inflammation: advanced genetic tools for gut commensals Lloyd Mayer Scholar Charles Rosadini, PhD Boston Children’s Hospital Boston, MA Regulation of innate immunity in intestinal epithelial cells

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

Rolf Benirschke Research Award Peter Higgins, MD, PhD, MSc University of Michigan Ann Arbor, MI Clostridium difficile infection induces changes in the gut microbiome that lead to ulcerative colitis flares Ethel Wilson Bowles and Robert Bowles Memorial Fund Uma Mahadevan, MD University of California, San Francisco San Francisco, CA PIANO: Pregnancy in IBD and Neonatal Outcomes: In utero exposure to biologics and increased neonatal infections Flowerree Foundation Declan McCole, PhD University of California, Riverside Riverside, CA Regulation of intestinal microbes by the IBD candidate gene PTPN2 The Goldman Scholar in Pediatric Research Julie Saba, MD Children’s Hospital & Research Center Oakland Oakland, CA Sphingosine-1-phosphate lyase in inflammatory bowel disease

Linda Tallen & David Paul Kane Educational and Research Foundation N. Jewel Samadder, MD University of Utah Salt Lake City, UT Cancer in inflammatory bowel disease: the role of family history—a genealogical study in Utah F.M. Kirby Foundation Lucia Suarez-Lopez, PhD Massachusetts Institute of Technology Koch Institute for Integrative Cancer Research Cambridge, MA Evaluation of MK2 inhibition as a novel therapy for IBD treatment and colitisassociated cancer prevention Richard Klapman Memorial Research Grant Kathryn Hamilton, PhD University of Pennsylvania Philadelphia, PA Role of IMP1 in the pathogenesis of inflammatory bowel disease 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

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The Leona M. and Harry B. Helmsley Charitable Trust has been a visionary supporter of IBD research, providing significant support in 2016 to the Foundation’s IBD Plexus® platform and our initiatives in genetics, microbiome, and the cost of IBD. In addition to its extraordinary commitment to the groundbreaking work of these initiatives, the Helmsley Charitable Trust has funded the following investigatorinitiated awards: Clara Abraham, MD Yale University New Haven, CT Mechanisms modulating pattern recognition receptor-induced signaling in myeloidderived cells Rana Al-Sadi, PhD University of New Mexico Albuquerque, NM MMP-9 modulates intestinal epithelial tight junction barrier and intestinal inflammation Mohammad Alam, PhD Emory University Atlanta, GA Role of N-formyl peptide receptor (FPR) in microbiota-mediated intestinal homeostasis, barrier integrity, and wound restitution 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 Amlan Biswas, PhD Boston Children’s Hospital Boston, MA Deciphering the role of mucosal innate immunity in maintaining intestinal homeostasis Brigid Boland, MD University of California, San Diego La Jolla, CA Identifying biomarkers predictive of clinical and endoscopic response to vedolizumab in inflammatory bowel disease Jennifer Brazil, PhD University of Michigan Ann Arbor, MI The role of Lewis glycans in regulating neutrophil transepithelial migration and neutrophil function in the inflamed intestine Michael Bscheider, MD Stanford University Palo Alto, CA Vitamin D signaling and dendritic cell control of immune homeostasis and colitis

32

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

Sandra Fernandes Denney, PhD SUNY Upstate Medical University Syracuse, NY Analysis of SHIP1 expression, activity, and sequence in Crohn’s disease

Maria Ciofani, PhD Duke University Medical Center Durham, NC Network approach to dissecting Th17 cell mediators of IBD

Mark Frey, PhD Children’s Hospital Los Angeles Los Angeles, CA Suppression of pro-inflammatory macrophage activity by ErbB4

Valerie Curtis, PhD University of Colorado Denver, AMC and DC Aurora, CO Human deneddylase-1 (DEN-1) in the resolution of mucosal inflammation

Melanie Gareau, PhD University of California, Davis Davis, CA The microbiota-gut-brain axis in pediatric IBD

Carlo De Salvo, PhD Case Western Reserve University Cleveland, OH Role of gut microbiota in the pathogenesis of intestinal fibrosis 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 Enric Esplugues, PhD Yale University New Haven, CT Controlling pathogenic TH17 cells in inflammatory bowel disease

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 Simon Hogan, PhD Cincinnati Children’s Hospital Medical Center Cincinnati, OH Leukocyte immunoglobulin-like receptor B3 in innate colonic inflammation in pediatric UC

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 disease Efi Kokkotou, MD, PhD, DSc Beth Israel Deaconess Medical Center Boston, MA Treating IBD with an MCH antagonist: a proof-of-concept clinical trial Frits Koning, PhD Leiden University Medical Center Leiden, Netherlands Identification of Crohn’s disease-specific immune signatures through high-resolution multiparameter 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 Ken Lau, PhD Vanderbilt University Medical Center Nashville, TN Spatio-temporal dissection of epithelial cell hierarchies in gut 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 Jesse Lyons, PhD Massachusetts Institute of Technology Cambridge, MA In vivo systems analysis of murine colitis: investigating mTOR in colonic homeostasis and inflammation

34

Ka Man Law, PhD University of California, Los Angeles Los Angeles, CA The role of 133a-aftiphilin interaction in colonic inflammation Damian Maseda, PhD Vanderbilt University Medical Center Nashville, TN Control of regulatory and colitogenic T cells in murine IBD by PGE2 Jason Matthews, PhD Emory University Atlanta, GA Role of defective signaling events on epithelial wound healing in IBD Jeannette Messer, DVM, PhD University of Chicago Chicago, IL The impact of Crohn’s disease-associated NOD2 genetic polymorphisms on HMGB1 functions in intestinal epithelial cells Jorge Munera, PhD Cincinnati Children’s Hospital Medical Center Cincinnati, OH Human intestinal organoids as a model of ulcerative colitis 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 disease 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 Bernardo Reis, PhD Rockefeller University New York, NY The role of T-bet in IEL function and maturation Alexander Rodriguez-Palacios, DVM, DVSc, PhD Case Western Reserve University Cleveland, OH Characterization of early pathogenic genes in experimental IBD Charles Rosadini, PhD Boston Children’s Hospital Boston, MA Regulation of innate immunity in intestinal epithelial cells 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 Rose Szabady, PhD University of Massachusetts Medical School Worcester, MA Regulation of anti-inflammatory lipid secretion from intestinal epithelial cells by the resident microbiota

Casey Weaver, MD The University of Alabama at Birmingham Birmingham, AL United States 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

Ryan Ungaro, MD Icahn School of Medicine at Mount Sinai New York, NY Assessing predictors of response to antitumor necrosis alpha therapy in early inflammatory bowel disease patients Henrique Veiga-Fernandes, PhD, DVM Instituto de Medicina Molecular Lisbon, Portugal Regulation of innate lymphoid cell function and intestinal defense by neurotrophic factors Qun Wang, PhD Iowa State University of Science and Technology Ames, IA Targeted delivery of intestinal stem cells to treat inflammatory bowel disease

36

Friends of the Foundation The following individuals, foundations, and companies 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.

INDIVIDUALS AND FOUNDATIONS

Visionaries

Champions

The Eli and Edythe Broad Foundation Ellen and Daniel Crown The Leona M. and Harry B. Helmsley Charitable Trust Stolte Family Foundation Michelle and Howard Swarzman Mary and Tim Walsh Anonymous (1)

Rolf Benirschke Legacy Foundation Lisa and Matt Chanoff David R. Clare & Margaret C. Clare Foundation in memory of Margaret Lynne Clare The Dorfman Foundation David and Karen Howe Linda Tallen & David Paul Kane Educational and Research Foundation Robin Kaplan Memorial Fund Marcia Rolfe-Mishaan and Richard Mishaan Ilene Schwartz The Lynn Shepard Trust Hannah and Karl Voskuil Zankel Fund Anonymous (3)

Innovators Estate of Donald Frank (Rus) Davis Marcy and Arthur Falcone Anonymous (1)

Pioneers Ann and Jay Davis Kupfer (Megna) FBO Harmon Hook Mary Jo and Donald Lenauer Martha Jane Morris Estate Janet and Elvin Price Roddenberry Foundation Dulcy and Jerry Rosenberg Ellie Carmody and Daniel Stone Maxine and Jack Zarrow Family Foundation

Friends Albany Medical Center The Alkek and Williams Foundation Pauline Arama-Olsten The Aronson Family Foundation Gwen and David Baker Howard A. Balaban Katherine and Mark Bellisimo

38

Gordon M. Bethune Angela and Robert Biggar Ethel Wilson Bowles and Robert Bowles Memorial Fund Joyce O. Brandman Nancy and Howard Brown Karen and Steven Kay Penny Burch Johnson and Dan Johnson Kulynych Family Foundation Martin R. Cobb Becky and Chris Collette Ben Darnell Delman-Mortenson Charitable Foundation The Derfner Foundation Joseph Drown Foundation DSF Charitable Foundation The Samuel R. Dweck Foundation Stanley Elmaleh Elno Family Foundation Engelstad Family Foundation Lara Englebardt Metz and Corey Metz Arthur J. Epstein Jennifer Feiken Henry M. Fenton Trust Finkelstein Family Foundation Flowerree Foundation Allyson and William Fox Bruce Frankel Patty and Alex Funderburg Galveston County Senior Citizens Activities, Inc. Rollin M. Gerstacker Foundation Greg Gilbert Shaldine and Richard Gillman Lisa and Douglas Goldman Fund Lisa and Robert Goldstein Andi and Jim Gordon The Grainger Foundation Sue Gross Kelley and Tom Gunkel

Judith Hannan Elizabeth Heyman Winter Evelyn Heyward Rochelle and David Hirsch Hoag Memorial Hospital Presbyterian The Holthouse Foundation for Kids Jean A. Hough Trust Helene Houle and John Nasseff Robert and Ellen Jasper Lisa and Norman Judah Sandra and Jeffrey J. Justin Barbara and Leo Karas Judi and Joey Karas The Louis J. and June J. Kay Foundation Susie and Michael Kerr The Khurana Family Charitable Fund F.M. Kirby Foundation Gail and Donald Klise Jill and Kurtis Krentz Kritchman Family Foundation Leavitt Family Foundation Eileen and Peter Lehrer Carol Augustyniak and Stephen M. Marcus Debbie and Jeff Margolis Wilbur May Foundation The McCready Family R & G McDonald Trust John P. McGovern Foundation Jamie L. Mendelsohn Sara and Richard Mershad Diane Miller Marcie Miller Comyns and John R. Comyns Eve and Stephen Milstein Edward D. & Anna Mitchell Family Foundation Francine and Laurance Nagin Tessie and Jeff Nedelman Elyse and Michael Newhouse Estate of Lilian Niemi Pamela and Edward Pantzer

Patriarch Family Foundation Penn State Hershey Medical IBD Center Gail and Berndt Perl Sumner M. Redstone Rochester Area Community Foundation Jeffrey Rosen Carolyn and Marc Rowan Fayez Sarofim Lisa and Mark Schneider Sara and Greg Seifert Trudi and Christopher Seiwald The Shapiro Family Cynthia and Bruce Sherman Karen and Gary Singer Bonnie and Andrew Stern Michele and Steven Sweetwood Sara Tayeb-Khalifa and Hussein Khalifa Carmella and Peter Tully Dan Tutcher Valero Energy Foundation Ali and Alan J. Vaynerchuk Elizabeth Vaynerchuk Vitalogy Health Foundation Emil & Rita Weissfeld Family Foundation Aaron Weitman Rebecca and Terry Wiler Georgene and Steven Winick William Wise Ximed Digestive Disease Research Center Anonymous (3)

40

Corporate Supporters The Crohn’s & Colitis Foundation is proud to recognize the generosity of corporations around the world for supporting patient and professional education programs 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.

Visionaries AbbVie Nestlé Health Science Takeda Pharmaceuticals U.S.A., Inc. Innovators Shire plc Pioneers Janssen Biotech, Inc. Luitpold Pharmaceuticals, Inc. Mortenson Construction Pfizer, Inc. Salix Pharmaceuticals, Inc. UCB, Inc. Champions Celgene Corporation Genentech, Inc. Gilead Sciences, Inc.

Friends Act 1 Personnel Services Atlanta Attachment Co. Atlanta Gastroenterology Associates Bloomberg L.P. Capital Digestive Care, LLC CJP Dietz & Watson Disney Worldwide Services, Inc. The Durst Organization L.P. Edmunds & Associates Fairview Specialty Pharmacy Fifth Avenue of LI Realty Associates Heller Waldman J. Derenzo Company Jendoco Construction Corporation Kohl’s Cares Land Title Guarantee Company

MDC/Richmond American Homes Foundation Microsoft Corporation Minnesota Gastroenterology, PA Nike, Inc. Point Inside, Inc. RK Centers Speedy’s 66/Fiesta Mart Charity Golf Tournament UnitedHealth Group Valero Energy Foundation Viacom Wells Fargo Foundation Anonymous (1) Media Partners Outcome Health ReachMD

President’s Corporate Circle 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.

AbbVie Allergan Plc Boehringer Ingelheim Pharmaceuticals, Inc. Celgene Corporation Genentech, Inc. Gilead Sciences, Inc.

Immune Pharmaceuticals, Inc. Janssen Biotech, Inc. Eli Lilly and Company Medtronic Plc Pfizer, Inc. Prometheus Laboratories, Inc. RedHill Biopharma Ltd.

Salix Pharmaceuticals Sandoz, Inc. Shire Plc Takeda Pharmaceuticals U.S.A., Inc. UCB, Inc.

National Event Supporters The following companies have shown their support of our Take Steps and Team Challenge national events through corporate team participation, donations, and other means.

Take Steps: AbbVie Janssen Biotech, Inc. Salix Pharmaceuticals, Inc. Shire plc Takeda Pharmaceuticals U.S.A., Inc. UCB, Inc.

Team Challenge and spin4: AbbVie Pfizer, Inc. Shire plc Takeda Pharmaceuticals U.S.A., Inc. UCB, Inc. 42

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 them with us, please contact Allison Coffey, Senior Vice President of Advancement, at 917-476-6511 or acoffey@crohnscolitisfoundation.org.

Marie Alexander Isabel B. Anderson Gloria M. Aucott Lois Bailey Nancy A. Baker Kevin Barnes Elizabeth Basshaw Lois A. Battilana Grace Benedikt Mary L. Benton Mary E. Berry Richard Binder Stephen Blank Tim J. Blank Dave Blood Susan Borzenski Bryce Breitenstein Jill Brenneman Dona M. Browne Rona Budovitch Sidney H. Bull Lander Burr Joan Canfield Patricia Carney Jennifer Christensen Laura Clifford Phil Conley Emil L. Conti

Michelle Covington Laura Cridlebaugh Betsy Culberson Phil Culberson John Dayton Marie De Barbieri Vera Deutsch Kenneth Dunst Georgette Edkins Irene E. Eizen Mary Jane Evans Karen M. Findora Alan B. Finn Dean Fiorelli Richard Frankel William Frankenstein Mary Franklin Linda Fraser Michele Freadman Daniel Friedrich Brenda Fudell Arlene Galbert Robert B. Garman Leonard Gilman Deborah P. Goldberg Donald Goldfarb Mona M. Gordon Randi Gordon

Miriam Gottlibb Greg C. Greenberg Clarence Gregory Lorri Greif Fanny Gruszecki Lillian J. Guy Bruce Hartzmark Judy Hauser Mary Sue Hawk Robert C. Hawk Daniel L. Hawkins Deanne Hill Herbert Hirsch Hanna L. Hombordy Nancy J. Homeyer William G. Homeyer Gerald L. Honl Lillian A. Ives Kathryn Ann Jacklin Sanford Kahn Audrey S. Katz Dawne Kaufman Mark Kaufman June Kay Louis J. Kay Millicent Kellner Beth King Steve R. Koonin

44

Michael J. Koss Eric A. Landau Renee Landau Gloria Langos Patricia LaPedus Karen LaRocca Irma S. Leon Marian F. Leonard Arthur Levine Judith Ludwig Levine Ronald B. Levy Michael Libys David Linemeyer Lucia A. Loding Adeline Luckman Juanita L. Ludke Harvey S. Luterman Rusty Maddox Marc Marasco Margaret Marasco Edna Marcus Carolyn Martin Thomas G. Martin Nancy J. McNabb Henry J. Meyer Cynthia A. Monter Noel Moore J. Roger Morrison Martha Morrison Pattie Moxham-Fisher Charles R. Munsey Bob Neider Helen B. Nelsen Barbara Nieder Bob M. Nieder Marie Nilsson Agnes E. Nixon Peter V. O’Connor Verne L. Oliver Annclaire Oscar Sarah-Katharine K. Owen Renee F. Parente

Faye C. Parham Santos G. Perez Neil Pessin Oscar E. Peterson George Pierson Christine Pitt Kathryn Pizza Christine Pollock Mark C. Pope Rex H. Rathbun Rosalyn C. Richman Seymour Roberts Robin M. Roger Mona J. Rosenberg Irwin M. Rosenthal Warren Ross Arnold Rudoff Carol G. Rudoff Selma P. Ryave Carolyn W. Sampson Richard L. Saphir Roberta Schecter Shirley Schreiber Ronald M. Schwartz Frank Scottie Carol Sexton Robert A. Sexton Judy Sigal Nettie R. Silverman Gary Sinderbrand George W. Smyth Efim Sobol Sheldon Sokol John S. Spiecker Pamela A. Staats Sylvia D. Steinbrock Beverly Taubel Rose M. Thibodaux Jane Thomas Julie Townsend Jeff Tupper Donald L. Van Ingen

Lawrence Vandervoorn Vivian Vandor Salvatore Varveri James Vaughan Helene M. Victor Sara Jane Victor Jeffrey J. Ward Rene Warren Joseph R. Weisel Arie Weissman Bob Whinehold Ray Whitaker Nancy A. Wiltgen Linda Windsor John W. Wine Mark S. Yanochko Charles Yochim Phoebe F. Yochim Anonymous (2)

46

2016 Financial Statements Statement of Financial Position

As of December 31, 2016, with summarized comparative information for 2015

ASSETS Cash and cash equivalents Pledges receivable, net Bequests receivable Prepaid expenses and other assets Investments Reinsurance contracts Charitable remainder trusts

2016 $

Fixed assets, net Total assets

9,597,768 8,757,455 257,999 2,829,904 16,203,354 249,735 42,640

2015 $

2,397,651

12,077,861 4,993,144 152,127 1,952,611 12,334,446 263,086 360,934 2,691,454

$

40,336,506

$

34,825,663

$

2,532,276 26,077,074 366,790 574,636

$

2,815,809 20,559,402 319,144 352,646

LIABILITIES AND NET ASSETS LIABILITIES Accounts payable and accrued expenses Research grants payable Deferred rent Deferred revenue Reinsurance contracts Total liabilities

249,735

263,086

29,800,511

24,310,087

Commitments (Note 8) NET ASSETS Unrestricted

(2,273,764)

(601,899)

Temporarily restricted

12,809,759

11,117,475

Total net assets

10,535,995

10,515,576

Total liabilities and net assets

$

40,336,506

$

34,825,663 48

Statement of Activities

For the year ended December 31, 2016, with summarized comparative totals for 2015 2016 Temporarily Unrestricted

Restricted

2016 ALLOCATION OF EXPENSE DOLLARS

2015 Total

Total

CONTRIBUTIONS, GRANTS, OTHER INCOME AND SUPPORT Contributions and grants: Contributions and grants from individuals, foundations and corporations

$ 11,075,883 $ 28,242,874

Contributed services and airtime

-

5,599,510

11,734,725

Special events revenue

33,288,016

-

33,288,016

33,593,605

Less: costs of direct benefits to donors

(6,797,322)

-

(6,797,322)

(6,460,701)

26,490,694

-

26,490,694

27,132,904

Federated campaigns

1,636,800

-

1,636,800

1,697,539

Bequests

1,197,449

-

1,197,449

504,256

46,000,336

28,242,874

74,243,210

77,376,136

Program service contracts

295,805

-

295,805

-

Interest and dividends

214,388

-

214,388

144,240

Net realized and unrealized gains (losses) on investments

464,760

-

464,760

(190,851)

Federal grant revenue

460,957

-

460,957

421,795

Royalties

504,368

-

504,368

505,884

Net special events revenue

Total contributions and grants

Administration:

$ 39,318,757 $ 36,306,712

5,599,510

Program Services:

83.0%

10.7%

(management and general) Fundraising:

6.3%

Other income:

Changes in gift annuities and remainder trust valuations

(733)

-

(733)

31,691

341,375

-

341,375

361,579

2,280,920

-

2,280,920

1,274,338

48,281,256

28,242,874

76,524,130

78,650,474

26,550,590

(26,550,590)

-

-

74,831,846

1,692,284

76,524,130

78,650,474

Research

31,577,146

-

31,577,146

29,644,489

Health professional education and public information

31,892,106

-

31,892,106

36,324,876

63,469,252

-

63,469,252

65,969,365

8,222,517

-

8,222,517

8,272,671

Other Total other income Total contributions, grants and other income Net assets released from restrictions Total contributions, grants, other income and support EXPENSES Program services:

Total program services Supporting services: Management and general

4,811,942

-

4,811,942

4,857,744

Total supporting services

13,034,459

-

13,034,459

13,130,415

Total expenses

76,503,711

-

76,503,711

79,099,780

Changes in net assets

(1,671,865)

1,692,284

20,419

(601,899)

11,117,475

10,515,576

Fundraising

Net assets, beginning of year Net assets, end of year

$

(2,273,764) $ 12,809,759

(449,306) 10,964,882

$ 10,535,995 $ 10,515,576

50

2016 National Board of Trustees The Crohn’s & Colitis Foundation is able to fulfill its mission and continue its battle against Crohn’s disease and ulcerative colitis because of our dedicated board of trustees. Here are the members of our 2016 national board: Officers:

National Trustees:

Vance Gibbs, Esq., Chair, National Board of Trustees Baton Rouge, LA

Maura Breen, Immediate Past Chair, North Falmouth, MA

Scott Snapper, MD, PhD Chair, National Scientific Advisory Committee (NSAC) Boston, MA

Christopher Collette, Eagan, MN

Brent Polk, MD NSAC Chair-Elect Los Angeles, CA

Donald Kortz, Cherry Hills Village, CO

Andrew Stern, Esq. Secretary Summit, NJ

James Lewis, MD, MSCE, Immediate Past NSAC Chair, Philadelphia, PA

Paul Salerno Treasurer Melville, NY

Mark Murray, PhD, Seattle, WA

Michael Osso President & CEO New York, NY

Jennifer O’Neill, New York, NY

Donald Burke, Langhorne, PA John Crosson, Los Angeles, CA John Hasenauer, Southport, CT Paula J. Hilbert, Basking Ridge, NJ Matt Leavitt, DO, FAOCD, Longwood, FL David N. Levenson, St. Louis, MO

Shelby Modell, Hewlett Harbor, NY Marcy Beth Nanus, New York, NY Joseph Nemmers, Scottsdale, AZ Maria Oliva-Hemker, MD, Baltimore, MD Eric Stone, San Francisco, CA Robert Van Pulley, Washington, DC

Co-Founders:

Bishop Walter Thomas, Baltimore, MD

Irwin M. Rosenthal and Suzanne Rosenthal William D. Modell and Shelby Modell Henry D. Janowitz, MD 52

Our Mission: To cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases.