Advancing cures, accelerating hope: 2013 Annual Report

Table of Contents From our leadership: Accelerating progress toward cures...... 1 OUR MISSION: Ready, aim, cure: Targeting genetic pathways...... 3 To cure Crohn’s Speaking out about CCFA’s Microbiome Initiative:...... 5 disease and Jonathan Braun, M.D., Ph.D. ulcerative colitis, Microbiome Initiative: Game-changing research...... 7 and to improve producing life-changing results the quality of life Nurturing young researchers: R. Balfour Sartor, M.D...... 9 of children and Patients and parents collaborating for cures:...... 11 adults affected by CCFA Partners Kids & Teens these diseases. Ayla Reiner: Hoping for cures in her lifetime...... 13 Carly Medosch: Supporting the IBD community...... 15 Research Awards and Initiatives...... 17 Friends of CCFA...... 27 Founders Society...... 37 Corporate Sponsors and Supporters...... 41 2013 Financial Statements...... 43 National Board of Trustees...... 47

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Fiscal 2013: January 1, 2013–December 31, 2013 From our leadership: Accelerating progress toward cures Dear Friends, 2013 ALLOCATION OF EXPENSE DOLLARS For the 1.4 million Americans who suffer from the debilitating effects of inflammatory bowel diseases (IBD), nothing is more important than finding better, more effective treatments and, ultimately, cures. Program Services: 81.6%

In 2013, CCFA-supported research into the multiple factors that influence disease onset and progression revolutionized our understanding of IBD, and is already opening doors to new drug treatments and diagnostics. The great strides made by talented and hard- working researchers collaborating through our Microbiome and Genetics Initiatives are inspiring those who suffer from Crohn’s and colitis to stay hopeful.

Our Pathways to Cures video series (link) outlines and celebrates recent advances made through CCFA-supported genetics and microbiome research. When we shared these videos through social media, one of the many viewers commented: “Best news I’ve heard in a very long time. Please continue the good work so all the people who live with this disease —including my daughter—can be cured.” Fundraising: 7.6% That mother and her daughter, and each individual and family impacted by IBD, are at the heart of everything we do at CCFA. From our groundbreaking research to our growing Administration: 10.8% patient and caregiver education and support programs, we are working harder and smarter (management and general) to enhance patient quality of life and accelerate progress toward cures.

We know we will succeed because we are joined and supported by the motivated and compassionate individuals, farsighted foundations, and committed corporate partners listed in this report. We are grateful, and we honor their generosity by devoting 82 cents of every donated dollar to mission-critical programs.

Together, we are achieving ambitious goals that are making a real and positive difference in the lives of IBD patients. The future looks very bright!

Sincerely,

Maura A. Breen Richard J. Geswell Chairman of the Board President & CEO

2 Ready, aim, cure: Targeting genetic pathways Knowing what causes disease is critical to developing the right treatments and cures. The daunting challenge presented by Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel diseases (IBD), is that several interrelated factors are involved in their onset and progression. Key among these are the human genetic mutations necessary for an individual to develop IBD.

Past CCFA-supported gene studies in IBD patients have helped to identify more than 160 genes associated with Crohn’s and colitis. We believe that intense investigation of these genes will eventually allow us to understand how their mutations interact with an PATHWAYS TO CURES individual’s environment (e.g., diet, stress, etc.) and the bacteria and viruses inhabiting his or her gut, or “microbiome,” to cause IBD. Catalog and But studying each of these genes individually would take many years and hundreds of define the investigators. Patients suffering from IBD can’t wait that long. That’s why CCFA launched functions of IBD-related its new Genetics Initiative in 2012. Its main objective is to prioritize those IBD genes that genes are most targetable by new therapies.

The Genetics Initiative brings together world-renowned IBD researchers from a wide variety of institutions to coordinate their efforts, share findings, and enhance and inform each other’s work. With CCFA’s support, they are accelerating the rate at which we can identify Identify and study the relevant genetic pathways that lead to IBD. Already, within its first year, the therapies that Initiative has identified five such pathways, and discovered that at least two are targetable impact these by existing drugs. One of these drugs has already been shown to be safe in humans. genes

With such rapid progress, our Genetics Initiative investigations are setting the stage for CCFA pharmaceutical and biotech partners to conduct the necessary drug development work that will lead to new, personalized treatments tailored to an individual’s genetic make- up. Results from this work will help develop entirely new approaches to IBD diagnosis and Develop treatment, and may even have the potential to identify interventions prior to disease onset. and test new therapies

Cures and preventive treatments

4 Speaking out about CCFA’s Microbiome Initiative: Jonathan Braun, M.D., Ph.D. Jonathan Braun, M.D., Ph.D., Professor and Chair Pathology & Laboratory Medicine, UCLA WHAT CAUSES IBD? David Geffen School of Medicine is the lead principal investigator for CCFA’s Microbiome Initiative, which celebrated its fifth anniversary in 2013. Early in his medical career, Dr. IBD presents a unique Braun’s path took a decisive turn after meeting Dr. Stephan “Steph” Targan, who is the challenge because it is a Director of the Inflammatory Bowel Disease Center and the Division of Gastroenterology multifactorial disease. In at Cedars-Sinai in Los Angeles. other words, many things influence disease onset and “I was doing basic research in immunology, and ready to focus on one of a number of progression. This includes diseases that are mysterious and complex enough to require a lifetime of study. Then I environmental factors, gut met Steph, who was already conducting groundbreaking research into Crohn’s and colitis. bacteria and viruses, and He was so passionate about his work, and optimistic that further research would lead to genes. breakthroughs and new treatments. So when I set up my first lab at UCLA, I decided to focus on the immune system’s role in IBD.

“At the time, no one knew what drove disease onset and progression. But we could observe MICRO B that IBD patients’ immune systems seemed to have gone berserk, and we believed that a T IO deeper understanding of the human immune system would help identify ways to quiet it N M E down, and treat IBD and other chronic diseases. E M Potential N

“Because Crohn’s and colitis run in families, we know that genetics is somehow involved. O Causes R

But even in identical twins, one twin might develop IBD and not the other. There had to be I

G V of IBD

E other, additional factors. Dr. Balfour Sartor pioneered the appreciation that our ‘microbiome’ N

N E

—the microorganisms in our intestines—is one of these factors. E

T I C

“The promise was so great that five years ago, CCFA organized a major research effort on S the microbiome in IBD, the Microbiome Initiative. It gathered international experts in disease processes, genome science, and immunology. What a delight and privilege to experience the work of so many passionate and brilliant researchers. We support and challenge each other, seeking answers and—as crucial—distilling questions that will move us from research to clinical innovation.

“We are at the beginning of a new future for IBD patients. In another five years, advances in understanding the microbiome will enable us to tell someone newly diagnosed with Crohn’s or colitis which specific microbial process is causing the war in their gut. For some of these processes, we’ll also have approaches to correct them. That will be an exciting time, refining and validating these approaches as clinical treatments or diets. Helping patients actually manage their microbiome will enable some patients to put their IBD into quiescence, and hence essentially a cure.”

6 Microbiome Initiative: Game-changing research producing life-changing results Early CCFA-supported research proved that the millions of bacteria and viruses that inhabit TAKING THE NEXT STEPS: the human gut play a significant role in the onset and progression of IBD. Known as our FIRST MICROBIOME “microbiome,” this small universe of organisms is incredibly complicated, and not only THERAPIES varies from person to person, but also changes day to day. Despite its complexity, CCFA is committed to understanding the microbiome better. In 2014, we will embark upon the next phase of this CCFA researchers met this challenge by developing cutting-edge tools and techniques enormously successful and to isolate, study, and identify the specific gut bacteria and viruses involved in IBD. Since game-changing initiative: 2008, CCFA studies have identified 72 bacterial species and 100 bacterial genes CCFA will start developing associated with Crohn’s disease, and further identified seven bacteria strongly associated the first microbiome with an aggressive form of the disease. These discoveries catapulted the field forward, and therapies. For the first have opened the door to clinical studies aimed at manipulation of microbial targets—a next, time, a treatment could be crucial step toward the development of treatments that address the cause, and not just the developed to address the symptoms, of IBD. cause—NOT the symptoms— of Crohn’s and colitis. CCFA’s Microbiome Initiative was launched to maximize this game-changing research, and rapidly accelerate further progress. The Initiative’s recent findings include:

• Identification of fourteen distinct pathways by which IBD bacteria live and reproduce— pathways that can be targeted with new therapies and diagnostic tests. This finding is a direct result of CCFA’s funding of the Microbiome Initiative. • Chemicals in the gut that are needed for inflammation-causing E. coli to grow can be altered to decrease its proliferation, creating an opportunity to develop new treatments to reduce that inflammation. • An individual’s genes dictate the types of bacteria that live in their gut. Better understanding of the role genetics plays in regulating microbiome bacteria promises new methods to diagnose IBD, and even opens up the possibility of treatment We anticipate that in the intervention before disease onset. next three to five years, we will have isolated microbial These and other CCFA breakthroughs are building the foundation needed to work with targets and the strategies industry partners that have the capacity to develop treatments that can alter the individual to manipulate them, which patient’s microbial make-up. Together, our work will result in new and better approaches to will form the basis for new diagnosis, treatment, and, ultimately, cures for IBD. therapeutic interventions.

8 Nurturing young researchers: R. Balfour Sartor, M.D. Balfour Sartor is Director of the University of North Carolina’s (UNC) Multidisciplinary IBD THE BROAD MEDICAL Center, where he is Co-Director of the Center for Gastrointestinal Biology and Disease. His RESEARCH PROGRAM groundbreaking research into the causes of Crohn’s disease was initially funded by CCFA, @ CCFA and he has been CCFA’s Chief Medical Advisor since 2007. Currently, he is Scientific Director of the newly formed Broad Medical Research Program at CCFA, which funds The Broad Medical Research innovative, early-stage research into IBD. Program was started by The Eli and Edythe Broad Foundation “It was 1971, during the spring semester of my senior year in college. I was getting in 2001 to encourage research married in June, and had been accepted into medical school starting in July. I thought into the cause, treatment, and I was invincible, but as it turned out, I wasn’t. Out of the blue, I became very sick, was cure of inflammatory bowel diseases. The program funds diagnosed with Crohn’s, and immediately had my first surgery. I knew nothing about the pilot research so that scientists disease before my diagnosis, and remember first reading about it from a borrowed medical can test their initial ideas and textbook at my radiologist’s office. I learned that I had a devastating disease, with no generate preliminary data in known cause and no cure. Surgeries and other treatments, at least, allowed me to proceed order to qualify for larger grants with my life and medical school. from other organizations. On January 1, 2014, the Broad “During a month-long total parenteral nutrition (TPN) treatment as an intern, I had a lot of Medical Research Program time to think. I realized we had to find the cause(s) of IBD before we could stop it. I shifted was integrated into CCFA’s my medical career focus from surgery to internal medicine. Later, as a GI fellow, I read comprehensive research portfolio. about John Schwab’s research at UNC on arthritis—like Crohn’s at that time, considered The new Broad Medical Research an autoimmune disease—and how intestinal bacterial products could cause chronic Program at CCFA will expand inflammation. I remember thinking, ‘It’s the bacteria, stupid!’ our ability to fund innovative projects in the early stages of exploration. We look forward to “I began to test my theory during a UNC research fellowship, but it was CCFA that provided managing and continuing this the extra year of funding I needed to prove the experiment and publish findings. What successful program. followed was support from the National Institutes of Health (NIH) and more funding from CCFA, and a lifetime of stimulating research. And, opportunities to give back. What’s so exciting to me about the Broad Medical Research Program at CCFA is that we’re nurturing young researchers, and enabling them to test promising theories about the causes and potential cures for IBD.

“My own Crohn’s disease is a huge motivating force for my work, but I’m also driven by the progress we’ve made in understanding the human microbiome, and its role in IBD and the need to translate this knowledge to new treatments. Today, when I’m sitting at the bedside of a young person just after surgery, and they ask whether their lives will ever be whole again, I can reassure them based on my own experience. I don’t wake up every morning thinking, ‘I have Crohn’s disease,’ but instead arise totally energized about what I need to accomplish that day in my lab, clinic, or lecture room.”

10 Patients and parents collaborating for cures: CCFA Partners Kids & Teens More than a million Americans living with Crohn’s disease or ulcerative colitis were first diagnosed when they were children. They and their families, as well as our medical and research communities, need more information about the effects of these diseases and their treatments on young bodies that are undergoing rapid physical and mental growth and development.

CCFA took a big step toward meeting that need in 2013 with the launch of CCFA Partners Kids & Teens, a parallel study of CCFA Partners, an Internet-based registry which is capturing and organizing information from IBD patients around the country. Partners is CCFA Partners: designed to better enable research studies of IBD patients, and is the largest registry of its By the Numbers kind in the field. • Number enrolled: 13,144 In addition to gathering medical data for use by researchers, our Partners registry also focuses on collecting information on patient quality of life, health behaviors, and disease • Number of U.S. states and symptoms—information that is particularly important to parents and pediatric caregivers of territories represented: 54 young people with IBD. Partners findings have already helped to identify simple activities • Gender breakdown of that can help prevent diseases related to IBD and its medications, such as weak bones, CCFA Partners: infections, and certain cancers; and through the growing Partners network, CCFA has been Male: 3,733 Female: 9,398 able to provide topics for patients to discuss with their physicians to improve their quality of life. • Breakdown by disease: Crohn’s disease: 8,345 CCFA Partners Kids & Teens will create a community of pediatric patients who are sharing Ulcerative colitis: 4,709 their experiences and challenges as well as their medical information over time. Their participation in research will yield a better understanding of the causes of Crohn’s disease and ulcerative colitis, and lead to better treatments and improved quality of life for participants. Together with their families and CCFA, they inspire hope for a healthy future for all children suffering from IBD.

12 Ayla Reiner: Hoping for cures in her lifetime Meno Reiner’s daughter, Ayla, was diagnosed with Crohn’s disease at the age of two. TOP EVENT FUNDRAISERS

“We didn’t know what was wrong, but we knew right away that Ayla wasn’t well. She was Our Take Steps Walks for Crohn’s vomiting all the time, and suffering what seemed to be terrible stomach cramps. The tests and Colitis and our Team Challenge started when she was six months old. Finally, when she was two, we got a diagnosis: her Endurance Training Program help doctors said they’d never seen anyone as young as Ayla with Crohn’s disease. fund the breakthrough research and life-changing patient education and support programs featured “My husband and I were hit hard by Ayla’s diagnosis. Our beautiful daughter was facing a in these pages. It is our pleasure terrible, chronic illness! I became anxious and depressed. Plus, I was terrified…I wasn’t sure to recognize our top program I have what it takes to be the mother of a child with Crohn’s. fundraisers for 2013, who raised at least $25,000 apiece: “I remember the day I called CCFA’s Help Center and spoke with an IBD specialist. I started learning more about the disease, and joined a support group where I started meeting Team Challenge: friends who also have young kids with Crohn’s. We understand each other’s challenges, and Steve Berns share the latest news and information about treatments and research. We lift each other Elaine & Laura Gordon up. The Link Family Jake Marcus & “Ayla is still struggling. She gets her food through a gastrostomy tube, and spends a day Team Intestinal Fortitude Tavish Margers in the hospital every seven weeks for an IV drug infusion. She often cries when she has a Marsha & Mark Morrow bowel movement. Brett Segall Robin Shainberg “But involvement with CCFA has helped me be the mother and caregiver I need to be for Ayla. And we’re working together to do something positive. Last fall, we participated as a Take Steps: family in a Team Challenge event, where Ayla inspired everyone with her story and heroism. Jenna Agin Having the group inspiration means everything! Elizabeth Heck Joel Levine “Supporting CCFA research is so important, because it is our best chance for better Helena Lindner treatment options, and maybe even cures in my daughter’s lifetime. I’m doing all I can to Robert Reiss give Ayla the best hope of a healthy future. Nothing is more important for us. And for my Paul Salerno grandchildren to come!” Norman Shub Gary Saulson

14 Carly Medosch: Supporting the IBD community Carly Medosch and her mother, Mary Jo, are co-founders and facilitators of the CCFA-sponsored support group in Fredericksburg, VA, which draws IBD patients from the mid-Atlantic region.

“My mom started worrying after I fell off the growth chart two years in a row during my In 2013, 12,000 people from annual pediatric check-ups. What I remember is feeling so tired all the time, which was odd around the world accessed because I’d always been so energetic as a kid. But none of my doctors could tell us why. life-saving information and support from Crohn’s and colitis “Then, we tried a new pediatrician in Richmond when I was 13. The minute she saw me, specialists at the Irwin M. she suspected Crohn’s disease. But this was 20 years ago. Not many knew about IBD, and and Suzanne R. Rosenthal IBD there was no Internet: My mom couldn’t Google “weight loss and extreme fatigue in my Resource Center. The Center is open Monday through Friday, 9:00 daughter” to get information. am to 5:00 pm EST, and can be reached by phone (888-694-8872), “My symptoms got worse, and I would spend days in bed and in pain. I barely had enough email ([email protected]), or live chat energy to get through school each day. Over the next decade, I had four surgeries and lost (www.ccfa.org). more than five and a half feet of intestine. 2013 Patient and Professional Education and Services: By the “I first heard about CCFA when my high school art teacher, Ms. Collins, gave me a gift Numbers membership. My mom took me to one of their half-day conferences, and for the first time I got to meet others with IBD. That really changed my attitude because some were a lot • More than 255,700 individuals sicker than me, but they were in great shape and dealing with their disease head-on. They were served in 2013. • 16,900 patients and family were inspiring. members attended in-person education programs. “When you have a chronic disease, you have a lot of downtime to think. I started thinking • 32,500 individuals about the world outside myself and how I could help others. There was no IBD support participated in live and group in our area, so my mom and I started one. That was six years ago, and now we have archived IBD webcast 40 members. Plus, we raise money and walk as a team for Take Steps. programs. • More than 16,700 users have registered on the CCFA “Lately, I’ve lobbied legislators for CCFA’s Day on the Hill and attended their IBD 2020 USA Community website meeting about improving the Quality of Care for patients. Plus, I was invited to speak at (www.CCFAcommunity.org). Stanford’s Medicine X conference. I realize now that I have a voice, and that sharing my • 62,000 visitors have accessed experiences and insights can help make things better for everybody.” the I’ll Be Determined website (www.ibdetermined.org). • 1,067 pediatric patients attended Camp Oasis. • GI Buddy, CCFA’s online and mobile disease management tracker, had 10,847 downloads of its iPhone app.

16 Research Awards and Initiatives CCFA’s investment in research can be broadly divided into research initiatives and grants. A core element of CCFA’s operation is the solicitation and peer review of grant applications from scientists around the world. In recent years, our process has involved an exhaustive peer review of more than 250 proposals per fiscal year. The selection and training of reviewers and grant criteria are dynamic and reflect the evolution of science and healthcare. CCFA grants are awarded based on merit and best fit for the research strategies established by the Foundation.

CCFA maintains a strategic plan and periodically reviews the field of IBD to target unmet needs. Our Challenges in Inflammatory Bowel Diseases document reflects a multidisciplinary review of the field and is the foundation for advances in the scientific understanding and standard of care of IBD. Major research concepts that surface as a result of these reviews form CCFA’s “Research Initiatives.” Research Initiatives are multi-institutional, large-budget research programs that focus on a specific area of IBD research. CCFA initiates, selects, and directs these programs at academic institutions, and actively recruits support for these programs.

The following is a selection of funded research grants and initiatives. CCFA donors of significant gifts have the opportunity to direct their donation to specific studies through a naming opportunity. The CCFA Annual Report lists the individual donors to the CCFA Research Program. Donors share in the excitement of meeting the researchers, touring their laboratories, and receiving annual progress reports.

18 CCFA would like to acknowledge the Kenneth Simpson, Ph.D. Chyi Hsieh, M.D., Ph.D. following whose gifts were designated in Cornell University Washington University School of Medicine support of individual researcher awards. Ithaca, NY St Louis Functional analysis of Crohn’s associated adherent St. Louis, MO and invasive E. coli The role of TCR specificity in regulatory T cell- We are particularly grateful for this mediated therapy for immune-mediated colitis important generosity. The William Stamps Farish Fund Mark Siegelman, M.D., Ph.D. F.M. Kirby Foundation, Inc. UT Southwestern Medical Center Howard & Rachelle Balaban Joseph Barbi, Ph.D. Jonathan Braun, MD, Ph.D. Dallas, TX Johns Hopkins University The Regents of the University of California, Los CD44act dependent trafficking of a highly potent Baltimore, MD Angeles subset of regulatory T cells in human IBD Targeting hypoxia inducible factor 1 (HIF-1) to treat Los Angeles, CA colitis and prevent inflammation-associated colon Establishing mechanistically validated targets The Goldman Scholar in Pediatric Research cancer induced by a human commensal and lead molecules for microbiome-based therapy Julie Saba, M.D. Children’s Hospital & Research Center Oakland in IBD Mishima Yoshiyuku, MD, Ph.D. Oakland, CA The University of North Carolina, Chapel Hill Rolf Benirschke Senior Research Award Sphingosine-1-phosphate lyase in inflammatory Chapel Hill, NC Peter Higgins, M.D., Ph.D. bowel disease Bacterial activation and functional role of University of Michigan IL-10-producing intestinal B cells in mucosal Ann Arbor, MI Keith and Janet Hall homeostasis and inflammation Clostridium difficile infection induces changes in Samantha Kennedy the gut microbiome that lead to IBD flares University of North Carolina Chapel Hill, NC George Kitzes, Ph.D. The Ethel Wilson Bowles and Robert Bowles NFIL3: A modulator of inflammation in IBD Memorial Student Research Fellowship Award Memorial Fund Emily Vivio Uma Mahadevan, M.D. Stephen Proctor Washington University University of California, San Francisco University of North Carolina at Chapel Hill St. Louis, MO San Francisco, CA Chapel Hill, NC The relationship between disease activity and PIANO: Pregnancy in IBD and Neonatal Outcomes: Evaluation of paneth cell antimicrobial activity in quantitative measures of sleep quality in In utero exposure to biologics and increased Irgm1-/- mice inflammatory bowel disease neonatal infections IBD Journal Editors Award Long Island Keyholder’s Circle Matthew & Lisa Chanoff Lee Denson, M.D. Edward Skolnik, M.D. Nita Salzman, M.D. Cincinnati Children’s Hospital Medical Center– New York University School of Medicine Medical College of Wisconsin Research Foundation New York, NY Milwaukee, WI Cincinnati, OH Pharmacological targeting of the potassium Paneth cells, the microbiome, and Crohn’s Innate dysregulation and growth failure in channel KCa3.1 as a potential therapy to treat disease susceptibility pediatric Crohn’s disease inflammatory bowel disease Lloyd Mayer Scholar Washington State Attorney General Robinna Lorenz, M.D., Ph.D. Florence Roan, M.D., Ph.D. University of Alabama at Birmingham Benaroya Research Institute Birmingham, AL Seattle, WA Altered handling and sensing of xenobiotics in Thymic stromal lymphopoietin (TSLP) in inflammatory bowel disease inflammatory bowel disease

Lance Robert McClendon Memorial Tournament Widom Family Research Scholar Award Casey Weaver, M.D. Masayuki Fukata, M.D., Ph.D. The University of Alabama at Birmingham University of Miami Coral Gables, FL Birmingham, AL Regulation of TLR-mediated intestinal A critical role for T cell-derived IL-6 in the inflammation versus immunomodulation pathogenesis of colitis Zankel Charitable Lead Trust Roddenberry Foundation The Zankel Fund Eyal Raz, M.D. Thomas Smyrk, M.D. University of California, San Diego Mayo Clinic La Jolla, CA Rochester, MN Investigating the natural history of UC-CRC Cyclic AMP-induced TH17 subset: Its role in carcinogenesis: Combining genetic and histologic intestinal homeostasis and inflammation assessments to improve current prognostic models of cancer risk The Linda Tallen and David Paul Kane Cancer Educational and Research Foundation Maria Abreu, M.D. University of Miami Coral Gables, FL Bacterial activation of the intestinal stem cells: Implications for colitis-associated cancer

Gary Sinderbrand Scholar Andrew Goodman, Ph.D. Yale School of Medicine New Haven, CT Dissecting the role of the human gut microbiota in aminosalicylate metabolism

20 The following grants have been funded Samuel Bertin, Ph.D. Elek Farkas, Ph.D. by The Leona M. and Harry B. Helmsley University of California, San Diego Emory University La Jolla, CA Atlanta, GA Charitable Trust: An unexpected role of TRPV1 channel in T cell- Role of claudins in epithelial barrier function induced colitis Research Fellowship Awards and IBD Mohammad Alam, Ph.D. Amlan Biswas, Ph.D. Emory University Children’s Hospital Boston Matthew Hepworth, Ph.D. Atlanta, GA Boston, MA University of Pennsylvania Mechanisms of NOD2-mediated granulomatous Role of N-formyl peptide receptor (FPR) in Philadelphia, PA inflammation of the ileum intestinal homeostasis and restitution Innate lymphoid cells regulate host-microbial Elisa Boden, M.D. interactions and intestinal inflammation Gaetan Barbet, Ph.D. Benaroya Research Institute Icahn School of Medicine at Mount Sinai Seattle, WA Yu-Hwa Huang, Ph.D. New York, NY Mechanisms of aberrant regulatory T cell Brigham and Women’s Hospital Innate recognition of apoptotic intestinal homeostasis in murine colitis Boston, MA epithelial cells CEACAM1 regulation of mucosal immune tolerance Jennifer Brazil, Ph.D. Emory University Kyriaki Bakirtzi, Ph.D. Atlanta, GA Katharina Lahl, Ph.D. The Regents of the University of California, Los The role of sialylated glycans in regulating PMN Stanford University Angeles clearance from the intestinal epithelium Palo Alto, CA Los Angeles, CA Plasmacyoid dendritic cells and anti-inflammatory Benoit Chassaing, Ph.D. Human intestinal epithelium miRNA intestinal IgA production expression and function in response to Georgia State University neuropeptide stimulation Atlanta, GA Processed foods, microbiota, and inflammatory Loris Riccardo Lopetuso, M.D. bowel disease Case Western Reserve University School of Rajatava Basu, Ph.D. Medicine The University of Alabama at Birmingham Hiutung Chu, Ph.D. Cleveland, OH Birmingham, AL California Institute of Technology Mechanisms of IL-33/ST2 axis in the pathogenesis Regulation of IL-22 induction from Th17 and Pasadena, CA of inflammation-associated colorectal cancer non-Th17 CD4 T cells Microbiome-induced autophagy as a novel therapy for inflammatory bowel disease Kirk Bergstrom, Ph.D. Andrew Mcintyre, Ph.D. Philip Dube, Ph.D. Oklahoma Medical Research Foundation Duke University Medical Center Children’s Hospital, Los Angeles Durham, NC Oklahoma City, OK Los Angeles, CA Manipulation of lymphocyte metabolism as a An unexpected role of TRPV1 channel in T cell- Protective role of EGFR signaling in colitis- induced colitis associated cancer strategy to reduce inflammation in colitis Zbigniew Mikulski, Ph.D. La Jolla Institute for Allergy & Immunology La Jolla, CA The role of intestinal mononuclear phagocytes in the SAMP1/YitFc spontaneous model of Crohn’s disease

Eoin McNamee, Ph.D. University of Colorado Health Sciences Center Aurora, CO HIF-dependent T cell regulation in inflammatory bowel disease

Charlotte Odendall, Ph.D. Children’s Hospital Boston Boston, MA Antiviral innate immunity in the intestine

Michio Onizawa, M.D., Ph.D. University of California, San Francisco San Francisco, CA A20 mediated regulation of ubiquitination and intestinal immunity

Christopher Packey, M.D. University of North Carolina at Chapel Hill Chapel Hill, NC The role of the intestinal microbiota and host innate immune responses in radiation-induced intestinal injury

Rebecca Santaolalla, Ph.D. University of Miami Miami, FL TLR4 regulation in colitis-associated neoplasia

Olga Sarmento, Ph.D. Mayo Clinic Rochester, MN KLF14 regulates a murine model of inflammatory bowel disease through chromatin changes in the FoxP3 gene

22 Michael Shanahan, Ph.D. University of North Carolina at Chapel Hill Chapel Hill, NC Mechanisms of paneth cell antimicrobial peptide abnormalities induced by Crohn’s disease-related genetic defects in autophagy

Arvind Srinath, MD University of Pittsburgh Pittsburgh, PA Functions of neonatal fc receptor for igg in antigen-presenting cells

Kelli VanDussen, Ph.D. Washington University in St. Louis St. Louis, MO Defining the basis of epithelial defects in Crohn’s disease patients

Xiang Xue, Ph.D. University of Michigan Ann Arbor, MI The role of hypoxic pathways in inflammatory bowel disease

Career Development Awards

Jeremy Adler, M.D. University of Michigan Ann Arbor, MI Customized daily symptom monitoring to improve symptoms and individualize treatment efficacy in pediatric inflammatory bowel disease

Carol Aherne, Ph.D. University of Colorado Denver Aurora, CO Epithelial-released netrin-1 attenuates Th1 T cell trafficking during chronic ileitis Dingding An, Ph.D. Wendy Gray, Ph.D. Harvard Medical School Cincinnati Children’s Hospital Medical Center– Boston, MA Research Foundation Symbiotic bacteria-mediated protection in Cincinnati, OH ulcerative colitis Development of the Self-management Transition Enhancement Program (STEP) Eric Campbell, Ph.D. University of Colorado Health Sciences Center Zaruhi Hovhannisyan, Ph.D. Aurora, CO Icahn School of Medicine at Mount Sinai Epithelial transcriptional imprinting and the New York, NY coordination of colitis resolution Factors mediating the induction of IL-17-producing regulatory T cells in IBD Bindu Chandrasekharan, Ph.D. Emory University Jianzhong Hu, Ph.D. Atlanta, GA Icahn School of Medicine at Mount Sinai Role of Neuropeptide Y in the pathogenesis of New York, NY inflammatory bowel disease Interplay of gut microbiome and host genes in Crohn’s disease Xinhua Chen, Ph.D. Beth Israel Deaconess Medical Center Boston, MA Nobuhiko Kamada, Ph.D. Protective roles of commensal bacteria cell wall University of Michigan components in Clostridium difficile infection Ann Arbor, MI Role of monocyte-derived macrophages in the John Garber, MD pathogenesis of Crohn’s disease Massachusetts General Hospital (The General Hospital Corp.) Judith Kelsen, M.D. Boston, MA The Children’s Hospital of Philadelphia Cytoskeletal regulation of intercellular junction Philadelphia, PA integrity and intestinal epithelial barrier function The oral microbiome and pediatric Crohn’s disease

Louise Glover, Ph.D. Jessica Lee, M.D. University of Colorado Health Sciences Center Children’s Hospital Boston Aurora, CO Boston, MA Regulation of epithelial innate immunity through Molecular characterization of new-onset pediatric HIF-mediated autophagy Crohn’s disease

24 Ronald Marchelletta, Ph.D. Jr-Wen Shui, Ph.D. Timothy Denning, Ph.D. The Regents of the University of California, San La Jolla Institute for Allergy & Immunology Emory University Diego La Jolla, CA Atlanta, GA La Jolla, CA The protective function of HVEM in colitis Role of IL-36g in the pathogenesis of IBD Protein Tyrosine Phosphatase N2 (PTPN2) pathogenesis and mucosal host defense negatively regulates Claudin-2 by modulating Edwin deZoeten, M.D., Ph.D. University of Colorado Denver Matriptase-1 Ronen Sumagin, Ph.D. Emory University Aurora, CO Atlanta, GA Targeting heat shock factor 1 in intestinal Craig Maynard, Ph.D. inflammation and T cell differentiation The University of Alabama at Birmingham Functional consequences for neutrophil interactions with apically expressed intestinal Birmingham, AL Scott Durum, Ph.D. epithelial ligands Regulation of IL-10 expression by intestinal T cells National Cancer Institute Frederick, MD Shipra Vaishnava, Ph.D. Eoin McNamee, Ph.D. Treatment of experimental IBD with L. lactis- UT Southwestern Medical Center University of Colorado Denver expressing IL-27 Dallas, TX Aurora, CO Bacteria-regulated vitamin A metabolism in the Stefen Feske, M.D. HIF-dependent regulation of effector TH1 CD4+ T intestine cell in inflammatory bowel disease New York University School of Medicine New York, NY Elizabeth Wohlfert, Ph.D. CRAC channels in Th1 and Th17 cells as mediators Amanda Ramer-Tait, Ph.D. State University of New York, University at Buffalo of colitis and therapeutic targets University of Nebraska-Lincoln Buffalo, NY Lincoln, NE Deciphering the mechanism of how GATA3 Mark Frey, Ph.D. Impact of Escherichia coli colonization on controls the fate of regulatory T cells at Children’s Hospital, Los Angeles susceptibility to inflammatory insults mucosal sites Los Angeles, CA NRG4 Regulation of colon epithelial cell survival Cary Sauer, M.D. Emory University Senior Research Awards Kasper Hoebe, Ph.D. Cincinnati Children’s Hospital Medical Center– Atlanta, GA David Artis, Ph.D. Research Foundation Magnetic resonance enterography to monitor University of Pennsylvania pediatric Crohn’s disease Cincinnati, OH Philadelphia, PA T cell-specific lysosome dysfunction as a primary Epigenetic regulation of IBD cause of IBD in Gimap5sph/sph mice David Shih, M.D., Ph.D. Cedars-Sinai Medical Center Ezra Burstein, M.D. Ivaylo Ivanov, Ph.D. Los Angeles, CA UT Southwestern Medical Center Columbia University Medical Center The roles of IBD-associated genes ATG16L1 and Dallas, TX New York, NY TNFSF15 in bacteria-mediated gut mucosal COMMD proteins and the regulation of Role of intestinal antigen-presenting cell subsets in inflammation inflammation in IBD Th17 cell induction by commensal bacteria Bana Jabri, M.D., Ph.D. D. Brent Polk, M.D. The University of Chicago Children’s Hospital, Los Angeles Chicago, IL Los Angeles, CA Role of epithelial Hsp70 and intestinal immune Protective effects of epidermal growth factor receptor (EGFR) signaling in colitis-associated homeostasis and colitis cancer

Algirdas Jesaitis, Ph.D. Carla Rothlin, Ph.D. Montana State University Yale University School of Medicine Bozeman, MT New Haven, CT Human neutrophil formyl peptide receptor Role of TAM receptor signaling in intestinal regulation in IBD mucosal homeostasis

Steffen Jung, Ph.D. Phillip Smith, M.D. Weizmann Institute of Science University of Alabama at Birmingham Birmingham, AL Rehovet, Israel Mechanism for CMV-induced exacerbation of Analysis of intestinal dendritic cell functions and inflammation in IBD their role in homeostasis and gut inflammation Adrian Ting, Ph.D. Dennis Kasper, M.D. Icahn School of Medicine at Mount Sinai Harvard Medical School New York, NY Boston, MD Role of necroptosis in IBD Novel therapeutics derived from the commensal microflora for treatment/prevention of IBD Stephen Tomlinson, Ph.D. Medical University of South Carolina Charleston, SC Randal Kaufman, Ph.D. Role of complement in inflammatory bowel Sanford-Burnham Medical Research Institute disease La Jolla, CA Endoplasmic reticulum stress and the unfolded Monika Vig, Ph.D. protein response in inflammatory bowel disease: A Washington University School of Medicine novel mechanism of pathogenesis and therapeutic St. Louis target St. Louis, MO To understand the mechanism of development of Crohn’s disease in CRAC channel-deficient mice Daniel Mucida, Ph.D. The Rockefeller University Melissa Wong, Ph.D. New York, NY Oregon Health & Science University Development and function of intestinal Portland, OR CD8alpha+CD4 T cells Macrophage-epithelial fusion in Crohn’s disease

26

Friends of CCFA The following individuals, companies, and foundations have made important and generous contributions to CCFA in support of our mission programs. We are deeply grateful to them for their generosity. We also gratefully acknowledge the support of the donors who contribute to the Crohn’s & Colitis Foundation through the Combined Federal Campaign, State Employee Campaigns, the United Way, and all other federated campaigns in the workplace.

Aaron Foundation Gil Aronson Katherine Bellissimo Abbott Laboratories Employee Atlanta Attachment Co. Tanisha Bellur Giving Campaign The Atlantic Club Louise & Leo Benatar AbbVie Debra August Rivka Bendelstein Robin & Barry Abelson Aurora Health Care Charles Bendit Abt Electronics and Appliances The Ayco Charitable Foundation The Frances & Benjamin Benenson Howard Adler Paul Azoulay Foundation, Inc. Warren & Sonia Adler Bae Systems Rolf Benirschke Legacy Foundation Aetna Michele & Scott Baena Jeffrey Berger Steven M. Agin Memorial Fund William & Mary Jane Bagby Michael Berger Jeff Aiken Roger & Lori Bahnik Paul Berger Aimbridge Hospitality David & Gwen Baker Berkowitz Pollack Brant Advisors & Akerman Senterfitt Howard & Rachelle Balaban Accountants Akin, Gump, Strauss, Hauer & Feld Arvindh & Lisa Balakrishnan The Berman Family Trust The University at Albany Foundation Bank of America Ed & Claudia Bernstein Albany Gastroenterology Bank of America Foundation Bernstein Family Charitable Consultants, P.C. Bank of America United Way Foundation Margaret Alkek Williams Campaign Berr Family Foundation Inc. Berk Allen Barbara & Fred Miller Family C.E. Berry’s Patch, LLC Allergan Foundation Foundation Lawrence Beshel ALMO Corporation Richard Barkett Beta Sigma Phi International Henry Alpert Deb Barnard Monarch Beverage Bonnie & Charlie Alter Mark Baron BIA Cares America’s Charities Ronald Baron Angela & Rob Biggar Fred C. and Katherine B. Andersen Neil Barr Billian Family Charitable Foundation Foundation Stanley Barry Christopher Billmeyer Scott & Monica Anderson Sandra Atlas Bass Bilzin Sumberg Baena Price & Andrew C. Carlos Family Bassler Family Foundation, Inc. Axelrod L.L.P. Investments, LLP BBL Construction Services Vicki & Rick Birdoff Lindsay & Richard Anfang BDO Seidman, LLP Bishop Family Foundation Aptalis Pharma Wayne Beacham Darlene Bisso Argonne National Lab Christopher Beale Howard Blatt Joseph Argus Beth Beatty Irma & Jon Blauner Maya Arisom Michael Bebon Emily Blavatnick John Scott & Jana Arnoldy Janine Behrman Michael Blechman

28 Jerry Blickman The Byrne Foundation Cleveland Clinic Community Health Charities of Texas Adam Blinderman C.L. King & Associates Clive, Davis, & Mann, LLC Community Health Charities of Bloomberg L.P. Patricia Cacioppo Coca-Cola Bottling Company Virginia Irene Bloomstein California Bank & Trust Harvey Cohen Community Health Charities of Nicole Blue Jim Campbell Allison & Craig Cohen WA State Blue Cross Blue Shield The Caring Foundation Miller Druck Specialty Contracting Community Health Charities of Blue Cross Blue Shield of Texas Gerard Carlucci Martin & Kelli Cohen Fein Wisconsin–Main Office Felice & Richard Blumberg Carolina Digestive Health Chris & Becky Collette Community National Bank Sylvia Blume Associates PA Colon & Rectal Surgery Associates Confidence Foundation Employee’s Community Fund of the Chase & Livi Carpenter The Community Foundation for Connecticut GI Boeing Company Guy Carpenter Greater Atlanta, Inc. Michael Contillo Kathy Boggan Rita & Frank Castagna Community Health Charities Rodney Cook James & Judy Bolin Cenegenics Medical Institute Community Health Charities– Leon Cooperman The Bone Family CenterPoint Energy National Office Leon & Toby Cooperman Anthony Bongiorno Irwin Chafetz Community Health Charities of Copeland Family Foundation John Borkey Evan Chafitz California Denise Cordeiro M. Taylor Bosarge Eugene & Roslyn Chaiken Community Health Charities of Coronado Biosciences, Inc. Boston Foundation Matt & Lisa Chanoff Colorado Covenant Foundation Ethel Wilson Bowles and Chaplin’s Automotive Group Community Health Charities of Gardner Cowles III Robert Bowles Memorial Fund Edward Charles Foundation Connecticut Wendy Cox Judy & James Boyle Charles Schwab Community Health Charities of William Criswell Tim Boyle Charlotte Gastroenterology & Illinois Gerald Croan Julie Brandes Hepatology PLLC Community Health Charities of John & Carolyn Crosson Saul Brandman Foundation Charm City Run Kansas and Missouri, Inc. Timothy Crosson Kevin Branigan The Bank Of New York Mellon Community Health Charities of Maine Daniel & Ellen Crown Abbey Braverman Naomi Cheatum Community Health Charities of Sara Crown Star Maura & Joseph Breen University of Chicago Maryland Harry & Sylvie Crum Brigadoon Financial, Inc Chico’s Retail Services Community Health Charities of Harry & Rosanette Cullen The Harry B. & Jane H. Brock Children’s Charities, Inc Minnesota Donna & Douglas Curling Foundation Church & Dwight Employee Community Health Charities of Lauren Curtin Joshua Broder Giving Fund National Capital Area The Cutler Family Robin Brody Rose & Don Ciampa Community Health Charities of Helen Cyker Brooklyn Nets Cincinnati Children’s Hospital Nebraska The Dallas Foundation Travis Brown Medical Center Community Health Charities of NJ Sean Dany Michael Brown Louise Cincotta Community Health Charities of Ben Darnell Nancy & Howard Brown Citizens Bank North Carolina Benjamin & Frances David Andrew Brucker City National Bank Community Health Charities of Ohio Foundation Elizabeth Bruns, Inc. Sandra Clark Community Health Charities of Thomas & Nancy Davidson Kimberly Bucci John Cleary Pennsylvania Drew Davies Donald & Linda Burke University Hospitals of Cleveland Community Health Charities of Ann & Jay Davis Burklund Distributors, Inc. The Jewish Federation of Cleveland Tennessee, Inc. Leah & Richard Davis Scott Davison Richard Evoy Fried, Frank, Harris, Shriver & Patricia De Ganahl Excellent Home Care Services Jacobson LLP Tama & Paul Deitch F.M. Kirby Foundation Virginia Friedhofer Charitable Trust Delta Air Lines, Inc. Fairway Group Central Lester & Laurie Friedman Sandra & Nelson DeMille Marcy & Art Falcone Friedman Supporting Foundation J. Derenzo Company Joan Falk Ken & Nancy Fuller Harold and Helen Derfner Wells Fargo The Funderburg Foundation Foundation Ed Farley & Sheila Wiedman-Farley Patty & Alex Funderburg Marcia & Doug DeVos Fatemeh Farmy Morris and Gertrude Furman Peter DeWalt Federal-Mogul Corporation Foundation Diamondston Foundation, Inc. Jennifer Feikin FYIF, Inc. George Dickstein Feil Family Foundation Gables Engineering Gary Diehl Hill Feinberg David Gantos Dietz & Watson Myron Feinberg Fund at The Diane & Barry Ganz Filomena Disisto San Diego Foundation The GE Foundation Corrine L. Dodero Foundation Denny & Amy Feit Irwin & Joan Geduld Family Michael & Patti Dodson Gregg Felton Foundation, Inc. Bernice Drapkin Maxwell Felton The Gelber Foundation Dream Foundation (Kiki & Steven Robert Fendrich Family Trust GEM Realty Capital Esrick & Family) Lori & Howard Fensterman Genentech Joseph Drown Foundation Ferring Research Institute General Constructors Inc. Wendy & Jonathan Dulman The Feuerring Foundation Fredric Gershon Jonathan Dulman Fidelity Charitable Gift Fund Gestalt Assoc., Inc./Business of Eastern Bank Charitable Foundation Fifth Ave of L.I. Reality Assoc.– People Edmunds & Associates Rita and Frank Castagna Richard Geswell Eisenhower Medical Center David Fine GI Associates, LLC Elan Pharmaceuticals Fine Foundation–Milton & Giant Eagle Foundation ElectroImpact, Inc. Sheila Fine New York Football Giants, Inc. Ellison Technologies Lawrence & Barbara Finkelstein Edward & Kimberly Gibbons Thomas Elmezzi Finkelstein Family Foundation Vance & Deborah Gibbs Sonja Elmore First Resource Development Jeff Gilbert Leonard Englander Company Shaldine & Richard Gillman Lara Englebardt Metz FirstTeam Real Estate Sloane & Marc Gillman Mitchell Enloe Mark Fisher Laurence Ginsberg Enterprise Holdings Foundation Brandon Flowers Glen Giovanucci The Lester M. & Sally Entin Patricia Forbes Give With Liberty Employee Foundation Regina & Gordon Ford Donations Epic Systems Corporation Nancy & Ronnie Ford Given Imaging, Inc. Essential Power Foundation Jim Frank John Glaser Maury Ettelson Bruce & Dale Frankel The Glaser Progress Foundation Wesley Evans Fremont Emergency Services Glassratner Advisory & Capital Group

30 Glen Oaks Jeffrey Gural Robert & Candy Glickman Eric B. Gurwin Joel & Brenda Glickman Gurwin Family Foundation Sidney & Cheryl Gluck Jill Haber Cari Godbois Keith Hall Ron and Judy Gold Family Fund Tara Hall Gerald & Nancy Goldberg Halpryn Family Foundation Inc Paul Goldenberg Hansen, Jacobson, Teller, Hoberman, Steve Golding Newman, Warren, Richman, Rush & Diane & Mark Goldman Kaller, LLP Lisa and Douglas Goldman Fund The Joshua & Marjorie Harris Family Herman Goldman Foundation Foundation Carol Goldsmith Tracy & Natalie Harris-Brown Lisa & Robert Goldstein Louis Harrison, M.D. & Ilene Harrison Elaine & Michael Goldstein John & Jacqueline Hasenauer Goldstein Family Foundation Mary Sue Hawk Steve Goodman Shellon Haynes Vicky Goodman Gina Head Jim & Andi Gordon HealthPartners Gotham Technology Group HEB John Gotschall Abbe and Al Heller Jill & Tom Gottlieb Jill Heller Lois Goulston Hellman Foundation Pamela Graven The Leona M. and Harry B. Helmsley Graybar Electric Company Charitable Trust Greater New York Insurance Barbara Herman Greater Twin Cities United Way Elizabeth Hernandez Greatergiving Elliott Hershberg Greg Greenberg Evelyn Heyward Michael Greenberg HFTP Front Range Chapter Greenberg Traurig, LLP Highmark Greenspun Family Foundation Hill Crest Foundation The Edmund J. & Afton S. Greenwell Rochelle & David A. Hirsch Foundation Foundation Josh & Lisa Greer William Hirschberg Kenneth Griffin Margaret Hively Vicki and Michael Gross Family Hoag Memorial Hospital Presbyterian Foundation, Inc. Geoffrey Hobart Grosvenor Capital Management Robert & Jill Hoberman Joe Gugger Family of Sam Hodes Betty Guiney Jeffrey & Christina Hoffmann Chris & Natalie Holcroft Charlotte Kaitz Barry Kringstein Tim Holiner Linda Tallen & David Paul Kane Ben & Judy Kronick Mark & Lori Horne Educational & Research Foundation Debrah Krulewitch Karen & David Hornik Robin Kaplan Memorial Fund Michael Krumbein Seth Horowitz Barbara & Leo Karas William Kussell Ralph and Genevieve B. Horween Judi & Joey Karas Paul Lacaruba Foundation Fred E. Kassner Family Ladenburg Thalmann Financial Howard Hanna Real Estate Services Foundation, Inc. Services David Howe Shelby & Shoney Katz Biana Lanson Serge Hoyda, LLC Himan Brown Charitable Trust Robert & Judie Lasser John & Betty Hrncir Orene & Robert Kearn Robert Lasser Shirley Hulse Jackie Kempner Estee Lauder IBM Michael Kerr Gary Lawson Imedex USA, Inc. Zachary & Jessica Kerr Dr. Matt & Judye Leavitt– Stamco Industries, Inc. Gene & Sue Kestenbaum Leavitt Family Foundation Infinity Elevator Company Keybank Foundation Josh Leavitt Intercontinental Hotels Group Hussein Khalifa Tower Charitable Foundation Patricia Ismail Douglas King Amy & Adam Leibner Robert Ivanhoe The Kirklin Clinic Maryellen Leister J&J Healthcare Systems Lois & Ken Kirschenbaum Stuart & Deborah Lempert Karl Jacob Constance Kittner Marc Lenner June Jacobs John & Lenora Klein Eugene Leone James & Judith K. Dimon Foundation Joyce & Robert Kleiner Suzanne LeRoy Janney Montgomery Scott Llc Richard Kleinman Nina Levene Janssen Biotech, Inc. Arnold Kling Claire Levine Robert & Ellen Jasper Donald Klise The Le Vine Foundation Jendoco Construction Corporation K’NEX Industries Rick Levinson Rainin Jennifer Craig Koenigsberg–CLK David Levy Catherine Jirak Denise Kokales James Lewis, M.D. Joe Johnson Scott Korde Ellen Li, M.D. Daniel & Penny Johnson Stuart & Claire Koshner Nikki & Rob Liberto Michael Johnson Ko-so Foundation Elizabeth & Matthew Lieberman Johnson & Johnson Koss Corporation The Lindner Family Johnson & Johnson Family of Keren & Jeff Kotowitz Barry & Rhonda Lippman Companies Matching Gift Program Ben Kovler Danette & Hank Little Dave & Jill Jones Patricia Kozuch John & Terry Llamas JPB Enterprises KPMG David & Nance Lodge Lisa & Norm Judah Ronald Kramer Loeb & Loeb JustGive The Ron Krancer Family Lois & Andrew Zaro Charitable Trust Jeffrey & Sandra Justin Kurtis & Jill Krentz Lordon Management Andrew & Shari Kairey Jodi Krieger Yellen Jeffrey Loria

32 Paul & Penny Loyd Peter McKee Cleo & Ruth Moore Pauline Arama-Olsten & Stuart Lubow McKesson Foundation Scott & Gayla Moore Stuart Olsten Allison & Craig Luckman Lance Robert McLendon Foundation Richard Moras Kiwoba Omiya-Allaire Lori Lupini Robert McParker Marie & Mark Moroney The Orchard Farm Foundation MacDonald-Peterson Foundation The Medallion Foundation Robert & Kimmey Morris The Oregon Clinic Harry & Cora Sue Mach MedVet Associates Alan & Faith Morris David Orentreich Family Foundation Cheri Machado-Knapp Donald & Gloria Melching Morris Family Foundation The Orentreich Family Foundation Tami Mack Memorial Hermann Health System Mark & Marsha Morrow Michael & Judy Orkin Macy’s Foundation Mercedes-Benz Dealers of MotherToBaby OTIS R. Scott Ornstein Pamela Maddox Greater Houston Robert & Marci Murdock Ortho Biotech Clinical Affairs, LLC– Mark Maddox Mercedes-Benz of Beverly Hills Hilary & Bruce Murray Johnson & Johnson Beth Madison Merck Partnership for Giving Alan Murray John Owen Madison Square Garden Campaign Andrew Muser Kathryn May Paben Family Thomas & Sarah Mahon Family Merit Partners Alice Muskovitz Charitable Trust Charitable Foundation Thomas Messina Myevent Com Jane Page Design Group Andrew Malik Metropolitan Realty Group LLC Francine & Laurance Nagin Sheri Ellison & Michael Page Gabi Mandel MFT Interests Nagin Foundation Inc. James Palma Nathan Mandelbaum Debra Michiels Carol & Bob Namoff Edward & Pamela Pantzer Glenda Rc Mann Microsoft Corporation Albert Nassi Papé Material Handling Tim Manning Middle Tennessee Electric National Basketball Association Lisa & James Pappas John Marciano Membership Corporation Arco National Construction Company James Pappas Joel Marcus Jerome Miller National Philanthropic Fund Partners Healthcare System Stephen & Carol Marcus Diane Miller NBTY Helping Hands Patriarch Family Foundation Deborah H. and Jeffrey H. Margolis Kean Miller, LLP Jeffrey & Tessie Nedelman Melroy Patterson Randy Markowitz Bryan Mills Jay Neveloff Kathleen & James L. Patton, Jr. Nancy Marx Mills Family Charitable Foundation The New York Community Trust Peoples Natural Gas University of Maryland Medical Stephen Milstein Samuel I. Newhouse Foundation Inc. Kendrick Perkins Center Andrew Milstein Robin & Chip Nielsen–In honor of Perry Ellis International Jared Masarek Milton M. Ratner Foundation Amy Nielsen Nadine & Sidney Pertnoy Lenore Maslia Minnesota Gastroenterology, PA Nigro Companies The Lauretta K. Peters and Matrix PDM Larry & Susan Mish Nike, Inc Richard R. Peters Charitable Harold Matzner Jeanne Mitchell Robert Noelke Foundation Hercules Corp. Shelby Modell North American Title Insurance The Pevaroff Cohn Family McCormick & Company Mitchell & Robin Modell Company Foundation McCoy Workplace Solutions Abby Modell North Easton Savings Pfizer Foundation Matching Gifts Michelle McCrea Dell Cloud Client Computing North Shore Gastroenterology & Pfizer Inc. Ashley O’Connor McCready & Christy Molasky Endoscopy Center Ben Pickering Mike McCready Daniel Monosson Novant Health Foundation Cynthia & Andrew Pickman McCurdy Family Foundation Denise Monteleone OCI Chemical Corp. Robert & Carroll Pierce John P. McGovern Foundation Monument Staffing Ashley O’Connor Robert Pilegge Matt McKee Les Moonves Ohio GI Carole Pittelman Mike Plant & Associates Inc. Jeff & Laura Robbin Sharon & Dave Salman Louis & Lori Plung Jewelry by Molly Roberts Saltchuk Resources, Inc. Melvin Plutsky Scott & Debbie Robinson Johnie Salvaggio Gary Podell C.H. Robinson International David Samson Peggy Pollock Foundation Rochester Area Community The Notsew Orn Sands Foundation Michael Polsky Foundation Santarus, Inc. Janet & Elvin Price Arthur Rodbell Rose & Shelby Santin PricewaterhouseCoopers Phyllis & Sidney Rodbell Herbert Saperstein Bettina Prober The Roddenberry Foundation Norton Sarnoff Prometheus Laboratories Inc. Janice & David Rodkin Eric Schapiro Patrick Purcell Leslee Rogath Bonnie & Gary Scharf Puyallup Tribe of Indians The Rogers Foundation Geoffrey Schechter Quality Brands Marcia Rolfe-Mishaan Schenker Family Foundation Quicken Loans Rose Community Foundation Jean Schepers James & Melinda Rabb David & Sherry Roseman Ellen Scherl, M.D. Arthur Rabin Rosenberg Family Foundation, Inc. Anton Schiff Mary & Bruce Rabiner Dulcy & Jerry Rosenberg Lyn & Carl Schmulen Martin Rabinowitz Chip Rosenbloom Mark & Lisa Schneider The Mary and Emanuel Rosenfeld Criswell Radovan, LLC Steve Schnurmacher Foundation The Stewart J. Rahr Foundation Jay & Jeanie Schottenstein Irwin & Suzanne Rosenthal Jan & Claudia Rask Foundation Daniel Rosett Raymond James & Associates Ilene Schwartz Bruce Rosner Lisa Rechler Malcolm Schwartz Thomas H. Redmiles Foundation, Inc. Sandy & Fred Roth Louise & Edwin Rothberg Robert J. Schweich Shari Redstone The Pamela and Stuart Jay & Joe Scoby Madeleine Redstone Rothenberg Foundation The Seaport Group Sumner Redstone The Richard Rothman Family Sally & Larry Sears The Regenstein Foundation Foundation Seattle Children’s Miguel Regueiro, M.D. Rowan Family Foundation Jack Sebastian Ilana & Samuel Reich Lee & Linda Rubin SEFCU Robert A. Reiss, M.D. Lauren & Mark Rubin Karen & Frank Segall Renaissance Companies William Rudin Arnold Seidel Retirement Planners International George Ruhana Caryn Seidman Reynolds America Ryan, Swanson & Cleveland, PPLC Vivian Serota Rich Foundation, Inc. Selma Ryave Barry Shain Rifenburg Construction John Sabel Ellen & Steven Shapiro Alberta Rifkin The Safeway Foundation Emily & Louis Shapiro Gerry Rittenberg Saint Arnold Brewing Company Gina & Sam Shapiro Stefano Rizzotto Paul Salerno Lester & Edna Shapiro Family Carol Roaman Salix Pharmaceuticals, Inc. Foundation

34 Law Offices of Robert Sharon, P.C. William Stamps Farish Fund Robert & Meryl Tillis Valassis Direct Mail K. C. Shasha Charitable Foundation Diane Stanbro A. Richard Tischler Richard & Elaine Valente Kay & Richard Sherman Steven Stark TJM Investments Wayne & Gladys Valley Foundation Shire Joseph F. Stein Family Kay Tornborg Van Van Auken Shire US, Citibank Delaware Foundation Inc. Carolyn Towbin Eddi & Wendell Van Auken Michelle Shopenn Bonnie & Steven Stern Tradeweb Donald Van Ingen Norman & Deborah Shub Emanuel & Elizabeth Stern Jonathan Trambert Jennifer Vargas Shubin & Bass, P.A. The Sternlicht Family Dohn Trempala Jan Vasys Beibut Shumenov Foundation, Inc. Tri City Rentals Veredus Corporation Randi Sidgmore Steven Swarzman Lawrence Tricerri Scott & Jody Verson Sigma Phi Gamma Stewart Title Guaranty Company Trigran Investments, Inc. Clifford Viner Tiya Silva Heidi & Chris Stolte TriHealth/Bethesda Hospital Jill Viner Susan & Scott Silver Roger Stone TriHealth/TDI Vintage Rallies, Inc. Adrianne Silver Maximilian Stone Donald Trump Virginia Mason Medical Center Ira Silverman Strasburger & Price, LLP The Tudor Foundation VWR Charitable Foundation Alexis & Joe Silvernale George & Irene Stratis Paul Tudor Jones Marie & Richard Wackenhut Harry Silverstein Elisabeth Straus Tuffli Family Foundation The Waggoners Foundation Simmons Bedding Company Martha Washington Straus– Tulalip Tribes Charitable Fund Stephen Wagner The Sidney, Milton & Leoma Harry H. Straus Foundation, Inc Carmella & Peter Tully Steve Waldner–Waldner Business Simon Foundation Lynn & Edward Streim Vanessa Turnbull Environment Carol Simon Robert Strigle Christine Turnbull Judith & Ed Walk Albert & Judith Simon Hans & Nancy Strohmer Turner Construction Company Tim & Mary Walsh Lisa & Jerry Simon Subaru of America Betty & Jess B. Tutor Matthew Walsh Michael Sims Sunbelt Holdings UBS Richard Walsh Karen Singer Swagelok Company UC Health The Walsh Foundation Skadden, Arps, Slate, Meagher & Valerie Swarbrick UC Physicians Floyd Floyd & Barbara Warkol Flom, LLP Steven Swarzman UCB, Inc Charitable Foundation Ted Slavin Howard & Michelle Swarzman UCSD Health Systems Warner Chilcott Don Slutzky Michele & Steven Sweetwood Blaine Udell Carol & Jake Watral Scott Snapper, M.D., Ph.D. Francisco Sylvester, M.D. UNC Healthcare WBC Group, LLC Beatrice Snyder Foundation Denise & Mark Tabbutt Under Armour Athletic Apparel Walton Street Capital Capital Solebury Capital Group Takeda Pharmaceuticals U.S.A., Inc. David & Lynda Underwood The Weckesser Family David Solomon Jodi & Paul Tartell IBD Program of the Underwood Elaine Weiler The Lawrence & Lillian Solomon TD Bank Center for Digestive Disorders at Bernice Weinrib (Podell) Fund, Inc. Kenneth Tedaldi Foundation Houston Methodist Hospital Michael & Sheryl Weisberg Paul Somerville Brian Teichman–Taping for the Blind United Way of Allegheny County Cathy Weiss Soros Fund Charitable Foundation JoAnn & Jonathan Terdiman United Way Valley of the Sun Aaron Weitman Matching Gifts Program Teva Pharmaceuticals University of Miami Linden Welch Tracey & Howard Sosnik Texas Children’s Hospital UPMC Health Plan Wells Fargo John Speer Texas Digestive Disease Consultants UPS Foundation, Inc. Wells Fargo Asset Based Lending Jerry Speyer Flora L. Thornton Foundation USAA Wells Fargo Bank Wells Fargo Community Support Campaign Wells Fargo Foundation Wells Fargo Capital Finance Inc. Harry Wendroff Solomon Werdiger Bruce Wessel West Penn Allegheny Health System Western Oil Company Joseph E Weston Public Foundation Anthony Westreich Company Mitch & Alicia Widom Glenn & Ellen Widom Wilbur May Foundation Sherri & Rob Wildstein John Wiley & Sons, Inc. Stuart Wilkins Georgene & Steve Winick Wishlist Foundation Wm. Sopko & Sons Co. Rick & Nadine Woldenberg Douglas Wolf Adam Wolf Beth Wolff Realtors David Workman Mary Aiken Wright Yablon Foundation The New York Yankees Foundation Ben Yarbrough Mark Zankel Peter Zappala Tiffany Zeller Havva Charm Zellner Lawrence Zimmerman Teri & Tony Zingale Caryn Zucker Eva & Bruce Zwigard

CCFA extends its deepest regrets to any donor whose name may have been inadvertently omitted from this list.

36 Founders Society Members of the Founders Society give a precious gift to everyone who has Crohn’s disease or ulcerative colitis: The promise that future generations will be spared the pain of these diseases.

The Society honors those who strengthen the vision and commitment of our founders by including the Foundation in their will or estate plans. Society members provide for a healthy tomorrow in a variety of ways, such as making a bequest by inclusion of the Foundation in a will, trusts, retirement plan gifts, and insurance policy gifts.

The above is a limited sampling of how a legacy to benefit the Foundation may be accomplished. For more information, please visit our website at www.ccfa.org/get-involved/ donate-to-ccfa or contact the Planned Giving Department at [email protected] or 800-932-2423. Please discuss with your attorney the means most appropriate for you. The Crohn’s & Colitis Foundation’s general counsel would also be happy to discuss with your attorney how best to accommodate your wishes.

The following are individuals with the foresight and generosity to have made provisions for the Crohn’s & Colitis Foundation in their estate plans:

Marie Alexander Dona Browne Kenneth Dunst Isabel Anderson Rona Budovitch Irene Eizen Margaret Ashburn Trust Estate of Charles P. Bukowski Estate of Elizabeth Erasmus Lois Bailey Estate of Sidney H. Bull Maury Ettleson Nancy Baker Lander Burr Mary Jane Evans Kevin Barnes Joan Canfield The San Diego Foundation Raymond Battilana Jennifer Christensen Myron Feinberg Endowment Grace Benedikt Laura Clifford Fund Estate of Julius Berkowitz Ruth Colten Karen Findora Mary Berry Phil Conley Alan Finn Robert Blank Michelle Covington Dean Fiorelli Stephen Blank Laura Cridlebaugh Estate of Ruth Fleisher Tim Blank Betsy Culberson Richard Frankel Estate of Dorothy Bliley Phil Culberson William Frankenstein Dave Blood John Dayton Mary Franklin Susan Borzenski Estate of De Barbieri Linda Fraser Bryce Breitenstein Vera Deutsch Michele Freadman Jill Brenneman Estate of Anna Druck Brenda Fudell

38 Estate of Ruth Furman Estate of Jules Furth Arlene Galbert Robert Garman Estate of Charles Geist Leonard Gilman Deborah Goldberg Estate of Henrietta Goldberg Donald Goldfarb Mona Gordon Randi Gordon Miriam Gottlibb The Estate of Marion Gould Greg Greenberg Marcia Greenburg Lorri Greif Lillian Guy Bruce Hartzmark Judy Hauser Robert Hawk Mary Sue Hawk Daniel Hawkins Deanne Hill The Hirsch Family Donor Advised Philanthropic Fund Hanna Hombordy Nancy Homeyer William Homeyer Gerald Honl Jean Hough Richard Ives Lillian Ives Sanford Kahn Audrey Katz Mark Kaufman Dawne Kaufman Cynthia Monter Gary Sinderbrand Mark Kaufman Noel Moore George Smyth The Louis J. and June J. Kay Martha Morrison Sheldon Sokol Foundation, Inc. Pattie Moxham-Fisher Seymour Sperling Millicent Kellner Charles Munsey John Spiecker Beth King Bob Nieder Pamela Staats Steve Koonin Barbara Nieder Sylvia Steinbrock Michael Koss Marie Nilsson Eugene Taubel Renee Landau Annclaire Oscar Beverly Taubel Eric Landau Sarah-Katharine Owen Jane Thomas Gloria Langos Renee Parente Julie Townsend Patricia LaPedus Faye Parham Felicia Traub Karen LaRocca Eleanore Patterson Michael Tronzo Estate of Pauline Leibow Santos Perez Jeff Tupper Irma Leon Neil Pessin Donald Van Ingen Judith Ludwig Levine Oscar Peterson Lawrence Vandervoorn Arthur & Judith Levine Christine Pitt Vivian Vandor Ronald Levy Kathryn Pizza Salvatore Varveri Michael Libys Christine Pollock James & Kathryn Vaughan David Linemeyer Mark Pope Sara Jane Victor Lucia Loding Rex Rathbun Jeffrey Ward Adeline Luckman Estate of Mary Ellen Reedy Rene Warren Juanita Ludke Rosalyn Richman Joseph Weisel Harvey Luterman Seymour Roberts Arie Weissman Rusty Maddox Robin Roger Estate of Marlene R. West Estate of Sylvia Malawsky Mona Rosenberg Ray Whitaker Marc Marasco R. Warren Ross Nancy Wiltgen Margaret Marasco Carol Rudoff Linda Windsor Edna Marcus Selma Ryave John Wine Thomas Martin Carolyn Sampson Mark Yanochko Carolyn Martin Shirley Schreiber Phoebe Yochim The Richard Ives & Lillian Ives Ron Schwartz Charles Yochim Revocable Trust Robert Sexton Nancy McNabb Carol Sexton Henry Meyer Judy Sigal

40 Corporate Sponsors and Supporters The Crohn’s & Colitis Foundation of America (CCFA) is proud to recognize the support of national sponsors and supporters from around the world. We thank these companies for joining with us in the battle against inflammatory bowel diseases. President’s Corporate Circle We are proud to acknowledge the members of the President’s Corporate Circle. These dedicated corporate leaders provide significant support to the Foundation. They are committed to being our partners in progress, and have made possible many of the research and education programs discussed in this annual report.

AbbVie Aptalis Pharma Coronado Biosciences, Inc. Janssen Biotech, Inc. Pfizer Inc. Prometheus Laboratories Inc. Salix Pharmaceuticals, Inc. Santarus, Inc. Shire Takeda Pharmaceuticals U.S.A., Inc. Warner Chilcott

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 Bridgestone Americas Tire Operations, LLC Janssen Biotech, Inc. Shire Santarus, Inc.

Team Challenge: AbbVie Delta Air Lines, Inc. Santarus, Inc. Shire Takeda Pharmaceuticals U.S.A., Inc. 42 2013 Financial Statements Statement of Financial Position As of December 31, 2013, with comparative information for 2012

ASSETS 2013 2012

Cash and cash equivalents $ 3,229,003 $ 3,988,534 Pledges receivable, net 6,316,978 6,327,452 Bequests receivable 141,029 391,750 Prepaid expenses and other assets 1,750,928 1,503,799 Investments 12,014,342 9,800,921 Reinsurance contracts 351,834 387,975 Charitable remainder trusts 317,709 348,730 Fixed assets, net 2,081,832 909,936

Total assets $ 26,203,655 $ 23,659,097

LIABILITIES AND NET ASSETS

LIABILITIES Accounts payable and accrued expenses $ 2,175,424 $ 1,822,728 Research grants payable 13,742,189 14,431,955 Deferred rent 177,269 115,838 Deferred revenue 465,050 500,000 Capital lease obligation 176,350 - Reinsurance contracts 351,834 387,975

Total liabilities 17,088,116 17,258,496

Commitments

NET ASSETS (DEFICIT) Unrestricted 1,342,935 (822,331) Temporarily restricted 7,772,604 7,222,932

Total net assets 9,115,539 6,400,601

Total liabilities and net assets $ 26,203,655 $ 23,659,097

44 Statement of Activities 2013 For the year ended December 31, 2013, with comparative totals for 2012 Temporarily 2012 Unrestricted Restricted Total Total CONTRIBUTIONS, GRANTS, OTHER INCOME AND SUPPORT Contributions and grants: Contributions and grants from individuals, foundations and corporations 8,670,003$ 14,361,362$ 23,031,365$ 23,438,727$ Contributed services and airtime 11,277,878 - 11,277,878 4,040,031 Special events revenue 32,783,254 - 32,783,254 31,974,506 Less: costs of direct benefits to donors (7,420,525) (7,420,525- ) (7,318,045) Net special events revenue 25,362,729 25,362,729- 24,656,461

Federated campaigns 1,508,887 - 1,508,887 1,535,948 Bequests 2,844,877 - 2,844,877 342,031 Total contributions and grants 49,664,374 14,361,362 64,025,736 54,013,198

Other income: Interest and dividends 119,148 - 119,148 217,168 Net realized and unrealized gains on investments 1,727,641 - 1,727,641 478,785 Federal grant revenue 354,502 - 354,502 108,756 Royalties 604,378 - 604,378 563,648 Changes in gift annuities and remainder trust valuations - 36,128 36,128 32,175 Other 432,355 - 432,355 204,908 Total other income 3,238,024 36,128 3,274,152 1,605,440

Total contributions, grants and other income 52,902,398 14,397,490 67,299,888 55,618,638

Net assets released from restrictions 13,847,818 (13,847,818) - - Total contributions, grants and other income and support 66,750,216 549,672 67,299,888 55,618,638

EXPENSES Program services: Research 18,255,285 - 18,255,285 16,811,162 Health professional education and public information 34,425,979 - 34,425,979 27,396,083 Total program services 52,681,264 - 52,681,264 44,207,245

Supporting services: Management and general 7,008,487 - 7,008,487 6,596,810 Fundraising 4,895,199 - 4,895,199 4,626,556 Total supporting services 11,903,686 - 11,903,686 11,223,366 Total expenses 64,584,950 64,584,950- 55,430,611

Changes in net assets 2,165,266 549,672 2,714,938 188,027

Net assets (deficit), beginning of year (822,331) 7,222,932 6,400,601 6,212,574

Net assets (deficit), end of year $ 1,342,935 $ 7,772,604 $ 9,115,539 $ 6,400,601 46 National Board of Trustees The Crohn’s & Colitis Foundation of America 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 national board: Officers: National Trustees: Maura C. Breen David Alberga, La Jolla, CA Chairman, National Board of Trustees Donald Burke, Langhorne, PA North Falmouth, MA John Crosson, Pacific Palisades, CA Jim Lewis, MD, MSCE Jennifer Feikin, Venice, CA Chairman, National Scientific Advisory Lawrence Finkelstein, Philadelphia, PA Committee (NSAC) Philadelphia, PA Steve Goodman, Atlanta, GA John Hasenauer, Southport, CT Scott Snapper, MD, PhD NSAC Chair-Elect Matt Leavitt, DO, Longwood, FL Boston, MA David N. Levenson, St Louis, MO Joel H. Margolese, Andover, MA Vance Gibbs, Esq. General Counsel Jeffrey H. Margolis, Newport Beach, CA Baton Rouge, LA Lloyd Mayer, MD, NSAC Chair Emeritus (deceased), New York, NY Paul Salerno Jeffrey P. Nedelman, New York, NY Treasurer Melville, NY Michele Rubin, APN, CNS, CGRN, Chicago, IL Francisco Sylvester, MD, Hartford, CT Richard J. Geswell President Paul Tartell, MD, Golden Beach, FL Wappingers Falls, NY

Co-Founders: Irwin M. Rosenthal and Suzanne Rosenthal (deceased), Long Island, NY

William D. Modell (deceased) and Shelby Modell, Long Island, NY

Henry D. Janowitz, MD (deceased) New York, NY

48

www.ccfa.org • [email protected] • 800-932-2423