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Advancing cures, accelerating hope: 2013 Annual Report

Crohn's & Colitis Foundation - Advancing cures, …...Knowing what causes disease is critical to developing the right treatments and cures. The daunting challenge presented by Crohn’s

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Page 1: Crohn's & Colitis Foundation - Advancing cures, …...Knowing what causes disease is critical to developing the right treatments and cures. The daunting challenge presented by Crohn’s

Advancing cures, accelerating hope:2013 Annual Report

Page 2: Crohn's & Colitis Foundation - Advancing cures, …...Knowing what causes disease is critical to developing the right treatments and cures. The daunting challenge presented by Crohn’s

Table of Contents

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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.

From our leadership: Accelerating progress toward cures........................................... 1Ready, aim, cure: Targeting genetic pathways................................................................... 3Speaking out about CCFA’s Microbiome Initiative:.......................................................... 5Jonathan Braun, M.D., Ph.D. Microbiome Initiative: Game-changing research............................................................... 7producing life-changing results Nurturing young researchers: R. Balfour Sartor, M.D....................................................... 9Patients and parents collaborating for cures:..................................................................... 11 CCFA Partners Kids & Teens 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

Fiscal 2013: January 1, 2013–December 31, 2013

ACCREDITEDCHARITY

give.org

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From our leadership: Accelerating progress toward cures

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Dear Friends,

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.

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.”

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 patient and caregiver education and support programs, we are working harder and smarter 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. GeswellChairman of the Board President & CEO

2013 ALLOCATION OFEXPENSE DOLLARS

Program Services: 81.6%

Administration: 10.8%(management and general)

Fundraising: 7.6%

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Ready, aim, cure: Targeting genetic pathways

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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 individual’s environment (e.g., diet, stress, etc.) and the bacteria and viruses inhabiting his or her gut, or “microbiome,” to cause IBD.

But studying each of these genes individually would take many years and hundreds of investigators. Patients suffering from IBD can’t wait that long. That’s why CCFA launched its new Genetics Initiative in 2012. Its main objective is to prioritize those IBD genes that 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 and study the relevant genetic pathways that lead to IBD. Already, within its first year, the Initiative has identified five such pathways, and discovered that at least two are targetable by existing drugs. One of these drugs has already been shown to be safe in humans.

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 treatment, and may even have the potential to identify interventions prior to disease onset.

Catalog and define the functions of IBD-related genes

Identify therapies that impact these genes

Develop and test new therapies

Cures and preventive treatments

PATHWAYS TO CURES

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Speaking out about CCFA’s Microbiome Initiative: Jonathan Braun, M.D., Ph.D.

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MICROBIOM

E

ENV

IRO

NM

EN

T

GENETICS

Jonathan Braun, M.D., Ph.D., Professor and Chair Pathology & Laboratory Medicine, UCLA 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. Braun’s path took a decisive turn after meeting Dr. Stephan “Steph” Targan, who is the Director of the Inflammatory Bowel Disease Center and the Division of Gastroenterology at Cedars-Sinai in Los Angeles.

“I was doing basic research in immunology, and ready to focus on one of a number of diseases that are mysterious and complex enough to require a lifetime of study. Then I met Steph, who was already conducting groundbreaking research into Crohn’s and colitis. He was so passionate about his work, and optimistic that further research would lead to 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 that IBD patients’ immune systems seemed to have gone berserk, and we believed that a deeper understanding of the human immune system would help identify ways to quiet it down, and treat IBD and other chronic diseases.

“Because Crohn’s and colitis run in families, we know that genetics is somehow involved. But even in identical twins, one twin might develop IBD and not the other. There had to be other, additional factors. Dr. Balfour Sartor pioneered the appreciation that our ‘microbiome’ —the microorganisms in our intestines—is one of these factors.

“The promise was so great that five years ago, CCFA organized a major research effort on 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.”

WHAT CAUSES IBD?

IBD presents a unique challenge because it is a multifactorial disease. In other words, many things influence disease onset and progression. This includes environmental factors, gut bacteria and viruses, and genes.

PotentialCauses of IBD

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Microbiome Initiative: Game-changing research producing life-changing results

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Early CCFA-supported research proved that the millions of bacteria and viruses that inhabit the human gut play a significant role in the onset and progression of IBD. Known as our “microbiome,” this small universe of organisms is incredibly complicated, and not only varies from person to person, but also changes day to day. Despite its complexity, CCFA is committed to understanding the microbiome better.

CCFA researchers met this challenge by developing cutting-edge tools and techniques to isolate, study, and identify the specific gut bacteria and viruses involved in IBD. Since 2008, CCFA studies have identified 72 bacterial species and 100 bacterial genes associated with Crohn’s disease, and further identified seven bacteria strongly associated with an aggressive form of the disease. These discoveries catapulted the field forward, and have opened the door to clinical studies aimed at manipulation of microbial targets—a next, crucial step toward the development of treatments that address the cause, and not just the symptoms, of IBD.

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 intervention before disease onset.

These and other CCFA breakthroughs are building the foundation needed to work with industry partners that have the capacity to develop treatments that can alter the individual patient’s microbial make-up. Together, our work will result in new and better approaches to diagnosis, treatment, and, ultimately, cures for IBD.

TAKING THE NEXT STEPS: FIRST MICROBIOME

THERAPIES

In 2014, we will embark upon the next phase of this enormously successful and game-changing initiative: CCFA will start developing the first microbiome therapies. For the first time, a treatment could be developed to address the cause—NOT the symptoms—of Crohn’s and colitis.

We anticipate that in the next three to five years, we will have isolated microbial targets and the strategies to manipulate them, which will form the basis for new therapeutic interventions.

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Nurturing young researchers: R. Balfour Sartor, M.D.

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Balfour Sartor is Director of the University of North Carolina’s (UNC) Multidisciplinary IBD Center, where he is Co-Director of the Center for Gastrointestinal Biology and Disease. His groundbreaking research into the causes of Crohn’s disease was initially funded by 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 innovative, early-stage research into IBD.

“It was 1971, during the spring semester of my senior year in college. I was getting married in June, and had been accepted into medical school starting in July. I thought I was invincible, but as it turned out, I wasn’t. Out of the blue, I became very sick, was diagnosed with Crohn’s, and immediately had my first surgery. I knew nothing about the disease before my diagnosis, and remember first reading about it from a borrowed medical textbook at my radiologist’s office. I learned that I had a devastating disease, with no known cause and no cure. Surgeries and other treatments, at least, allowed me to proceed with my life and medical school.

“During a month-long total parenteral nutrition (TPN) treatment as an intern, I had a lot of time to think. I realized we had to find the cause(s) of IBD before we could stop it. I shifted my medical career focus from surgery to internal medicine. Later, as a GI fellow, I read about John Schwab’s research at UNC on arthritis—like Crohn’s at that time, considered an autoimmune disease—and how intestinal bacterial products could cause chronic inflammation. I remember thinking, ‘It’s the bacteria, stupid!’

“I began to test my theory during a UNC research fellowship, but it was CCFA that provided the extra year of funding I needed to prove the experiment and publish findings. What 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.”

THE BROAD MEDICAL RESEARCH PROGRAM

@ CCFA

The Broad Medical Research Program was started by The Eli and Edythe Broad Foundation in 2001 to encourage research into the cause, treatment, and cure of inflammatory bowel diseases. The program funds pilot research so that scientists can test their initial ideas and generate preliminary data in order to qualify for larger grants from other organizations. On January 1, 2014, the Broad Medical Research Program was integrated into CCFA’s comprehensive research portfolio. The new Broad Medical Research Program at CCFA will expand our ability to fund innovative projects in the early stages of exploration. We look forward to managing and continuing this successful program.

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Patients and parents collaborating for cures: CCFA Partners Kids & Teens

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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 designed to better enable research studies of IBD patients, and is the largest registry of its kind in the field.

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 symptoms—information that is particularly important to parents and pediatric caregivers of young people with IBD. Partners findings have already helped to identify simple activities that can help prevent diseases related to IBD and its medications, such as weak bones, infections, and certain cancers; and through the growing Partners network, CCFA has been able to provide topics for patients to discuss with their physicians to improve their quality of life.

CCFA Partners Kids & Teens will create a community of pediatric patients who are sharing 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.

CCFA Partners:By the Numbers

• Number enrolled: 13,144

• Number of U.S. states and territories represented: 54

• Gender breakdown of CCFA Partners: Male: 3,733 Female: 9,398

• Breakdown by disease: Crohn’s disease: 8,345 Ulcerative colitis: 4,709

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Ayla Reiner: Hoping for cures in her lifetime

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Meno Reiner’s daughter, Ayla, was diagnosed with Crohn’s disease at the age of two.

“We didn’t know what was wrong, but we knew right away that Ayla wasn’t well. She was vomiting all the time, and suffering what seemed to be terrible stomach cramps. The tests started when she was six months old. Finally, when she was two, we got a diagnosis: her doctors said they’d never seen anyone as young as Ayla with Crohn’s disease.

“My husband and I were hit hard by Ayla’s diagnosis. Our beautiful daughter was facing a terrible, chronic illness! I became anxious and depressed. Plus, I was terrified…I wasn’t sure I have what it takes to be the mother of a child with Crohn’s.

“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 friends who also have young kids with Crohn’s. We understand each other’s challenges, and share the latest news and information about treatments and research. We lift each other up.

“Ayla is still struggling. She gets her food through a gastrostomy tube, and spends a day in the hospital every seven weeks for an IV drug infusion. She often cries when she has a bowel movement.

“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 family in a Team Challenge event, where Ayla inspired everyone with her story and heroism. Having the group inspiration means everything!

“Supporting CCFA research is so important, because it is our best chance for better treatment options, and maybe even cures in my daughter’s lifetime. I’m doing all I can to give Ayla the best hope of a healthy future. Nothing is more important for us. And for my grandchildren to come!”

TOP EVENT FUNDRAISERS

Our Take Steps Walks for Crohn’s and Colitis and our Team Challenge Endurance Training Program help fund the breakthrough research and life-changing patient education and support programs featured in these pages. It is our pleasure to recognize our top program fundraisers for 2013, who raised at least $25,000 apiece:

Team Challenge:Steve Berns

Elaine & Laura GordonThe Link FamilyJake Marcus &

Team Intestinal FortitudeTavish Margers

Marsha & Mark MorrowBrett Segall

Robin Shainberg

Take Steps:Jenna Agin

Elizabeth HeckJoel Levine

Helena LindnerRobert ReissPaul Salerno

Norman ShubGary Saulson

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Carly Medosch: Supporting the IBD community

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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 annual pediatric check-ups. What I remember is feeling so tired all the time, which was odd because I’d always been so energetic as a kid. But none of my doctors could tell us why.

“Then, we tried a new pediatrician in Richmond when I was 13. The minute she saw me, she suspected Crohn’s disease. But this was 20 years ago. Not many knew about IBD, and there was no Internet: My mom couldn’t Google “weight loss and extreme fatigue in my daughter” to get information.

“My symptoms got worse, and I would spend days in bed and in pain. I barely had enough energy to get through school each day. Over the next decade, I had four surgeries and lost more than five and a half feet of intestine.

“I first heard about CCFA when my high school art teacher, Ms. Collins, gave me a gift 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 sicker than me, but they were in great shape and dealing with their disease head-on. They were inspiring.

“When you have a chronic disease, you have a lot of downtime to think. I started thinking about the world outside myself and how I could help others. There was no IBD support group in our area, so my mom and I started one. That was six years ago, and now we have 40 members. Plus, we raise money and walk as a team for Take Steps.

“Lately, I’ve lobbied legislators for CCFA’s Day on the Hill and attended their IBD 2020 USA meeting about improving the Quality of Care for patients. Plus, I was invited to speak at Stanford’s Medicine X conference. I realize now that I have a voice, and that sharing my experiences and insights can help make things better for everybody.”

In 2013, 12,000 people from around the world accessed life-saving information and support from Crohn’s and colitis specialists at the Irwin M. and Suzanne R. Rosenthal IBD Resource Center. The Center is open Monday through Friday, 9:00 am to 5:00 pm EST, and can be reached by phone (888-694-8872), email ([email protected]), or live chat (www.ccfa.org).

2013 Patient and Professional Education and Services: By the Numbers

• More than 255,700 individuals were served in 2013.

• 16,900 patients and family members attended in-person education programs.

• 32,500 individuals participated in live and archived IBD webcast programs.

• More than 16,700 users have registered on the CCFA Community website (www.CCFAcommunity.org).

• 62,000 visitors have accessed 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.

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Research Awards and Initiatives

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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.

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CCFA would like to acknowledge the following whose gifts were designated in support of individual researcher awards.

We are particularly grateful for this important generosity.

Howard & Rachelle Balaban Jonathan Braun, MD, Ph.D. The Regents of the University of California, Los Angeles Los Angeles, CA Establishing mechanistically validated targets and lead molecules for microbiome-based therapy in IBD

Rolf Benirschke Senior Research Award Peter Higgins, M.D., Ph.D. University of Michigan Ann Arbor, MI Clostridium difficile infection induces changes in the gut microbiome that lead to IBD flares

The Ethel Wilson Bowles and Robert Bowles Memorial Fund Uma Mahadevan, M.D. University of California, San Francisco San Francisco, CA PIANO: Pregnancy in IBD and Neonatal Outcomes: In utero exposure to biologics and increased neonatal infections

Matthew & Lisa Chanoff Nita Salzman, M.D. Medical College of Wisconsin Milwaukee, WI Paneth cells, the microbiome, and Crohn’s disease susceptibility

Kenneth Simpson, Ph.D.Cornell UniversityIthaca, NYFunctional analysis of Crohn’s associated adherent and invasive E. coli

The William Stamps Farish Fund Mark Siegelman, M.D., Ph.D. UT Southwestern Medical Center Dallas, TX CD44act dependent trafficking of a highly potent subset of regulatory T cells in human IBD

The Goldman Scholar in Pediatric Research Julie Saba, M.D. Children’s Hospital & Research Center Oakland Oakland, CA Sphingosine-1-phosphate lyase in inflammatory bowel disease

Keith and Janet Hall Samantha Kennedy University of North Carolina Chapel Hill, NC NFIL3: A modulator of inflammation in IBD Stephen Proctor University of North Carolina at Chapel Hill Chapel Hill, NC Evaluation of paneth cell antimicrobial activity in Irgm1-/- mice

IBD Journal Editors Award Lee Denson, M.D. Cincinnati Children’s Hospital Medical Center– Research Foundation Cincinnati, OH Innate dysregulation and growth failure in pediatric Crohn’s disease

Chyi Hsieh, M.D., Ph.D. Washington University School of Medicine St Louis St. Louis, MO The role of TCR specificity in regulatory T cell-mediated therapy for immune-mediated colitis

F.M. Kirby Foundation, Inc. Joseph Barbi, Ph.D. Johns Hopkins UniversityBaltimore, MDTargeting hypoxia inducible factor 1 (HIF-1) to treat colitis and prevent inflammation-associated colon cancer induced by a human commensal

Mishima Yoshiyuku, MD, Ph.D.The University of North Carolina, Chapel HillChapel Hill, NCBacterial activation and functional role of IL-10-producing intestinal B cells in mucosal homeostasis and inflammation

George Kitzes, Ph.D. Memorial Student Research Fellowship Award Emily Vivio Washington University St. Louis, MO The relationship between disease activity and quantitative measures of sleep quality in inflammatory bowel disease

Long Island Keyholder’s Circle Edward Skolnik, M.D. New York University School of Medicine New York, NY Pharmacological targeting of the potassium channel KCa3.1 as a potential therapy to treat inflammatory bowel disease

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Lloyd Mayer Scholar Robinna Lorenz, M.D., Ph.D. University of Alabama at Birmingham Birmingham, AL Altered handling and sensing of xenobiotics in inflammatory bowel disease

Lance Robert McClendon Memorial Tournament Casey Weaver, M.D. The University of Alabama at Birmingham Birmingham, AL A critical role for T cell-derived IL-6 in the pathogenesis of colitis

Roddenberry Foundation Eyal Raz, M.D. University of California, San Diego La Jolla, CA Cyclic AMP-induced TH17 subset: Its role in intestinal homeostasis and inflammation

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

Washington State Attorney General Florence Roan, M.D., Ph.D. Benaroya Research Institute Seattle, WA Thymic stromal lymphopoietin (TSLP) in inflammatory bowel disease

Widom Family Research Scholar Award Masayuki Fukata, M.D., Ph.D. University of Miami Coral Gables, FL Regulation of TLR-mediated intestinal inflammation versus immunomodulation

Zankel Charitable Lead TrustThe Zankel Fund Thomas Smyrk, M.D. Mayo Clinic Rochester, MN Investigating the natural history of UC-CRC carcinogenesis: Combining genetic and histologic assessments to improve current prognostic models of cancer risk

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The following grants have been funded by The Leona M. and Harry B. Helmsley Charitable Trust:

Research Fellowship Awards

Mohammad Alam, Ph.D. Emory University Atlanta, GA Role of N-formyl peptide receptor (FPR) in intestinal homeostasis and restitution

Gaetan Barbet, Ph.D. Icahn School of Medicine at Mount Sinai New York, NY Innate recognition of apoptotic intestinal epithelial cells

Kyriaki Bakirtzi, Ph.D. The Regents of the University of California, Los Angeles Los Angeles, CA Human intestinal epithelium miRNA expression and function in response to neuropeptide stimulation

Rajatava Basu, Ph.D. The University of Alabama at Birmingham Birmingham, AL Regulation of IL-22 induction from Th17 and non-Th17 CD4 T cells

Kirk Bergstrom, Ph.D. Oklahoma Medical Research Foundation Oklahoma City, OK An unexpected role of TRPV1 channel in T cell-induced colitis

Samuel Bertin, Ph.D. University of California, San Diego La Jolla, CA An unexpected role of TRPV1 channel in T cell-induced colitis

Amlan Biswas, Ph.D. Children’s Hospital Boston Boston, MA Mechanisms of NOD2-mediated granulomatous inflammation of the ileum

Elisa Boden, M.D. Benaroya Research Institute Seattle, WA Mechanisms of aberrant regulatory T cell homeostasis in murine colitis

Jennifer Brazil, Ph.D. Emory University Atlanta, GA The role of sialylated glycans in regulating PMN clearance from the intestinal epithelium

Benoit Chassaing, Ph.D. Georgia State University Atlanta, GA Processed foods, microbiota, and inflammatory bowel disease

Hiutung Chu, Ph.D. California Institute of Technology Pasadena, CA Microbiome-induced autophagy as a novel therapy for inflammatory bowel disease

Philip Dube, Ph.D. Children’s Hospital, Los Angeles Los Angeles, CA Protective role of EGFR signaling in colitis-associated cancer

Elek Farkas, Ph.D. Emory University Atlanta, GA Role of claudins in epithelial barrier function and IBD

Matthew Hepworth, Ph.D. University of Pennsylvania Philadelphia, PA Innate lymphoid cells regulate host-microbial interactions and intestinal inflammation Yu-Hwa Huang, Ph.D. Brigham and Women’s Hospital Boston, MA CEACAM1 regulation of mucosal immune tolerance

Katharina Lahl, Ph.D. Stanford University Palo Alto, CA Plasmacyoid dendritic cells and anti-inflammatory intestinal IgA production

Loris Riccardo Lopetuso, M.D. Case Western Reserve University School of Medicine Cleveland, OH Mechanisms of IL-33/ST2 axis in the pathogenesis of inflammation-associated colorectal cancer

Andrew Mcintyre, Ph.D. Duke University Medical Center Durham, NC Manipulation of lymphocyte metabolism as a strategy to reduce inflammation in colitis

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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

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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

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Wendy Gray, Ph.D. Cincinnati Children’s Hospital Medical Center–Research Foundation Cincinnati, OH Development of the Self-management Transition Enhancement Program (STEP)

Zaruhi Hovhannisyan, Ph.D. Icahn School of Medicine at Mount Sinai New York, NY Factors mediating the induction of IL-17-producing regulatory T cells in IBD

Jianzhong Hu, Ph.D. Icahn School of Medicine at Mount Sinai New York, NY Interplay of gut microbiome and host genes in Crohn’s disease

Nobuhiko Kamada, Ph.D. University of Michigan Ann Arbor, MI Role of monocyte-derived macrophages in the pathogenesis of Crohn’s disease

Judith Kelsen, M.D. The Children’s Hospital of Philadelphia Philadelphia, PA The oral microbiome and pediatric Crohn’s disease

Jessica Lee, M.D. Children’s Hospital Boston Boston, MA Molecular characterization of new-onset pediatric Crohn’s disease

Dingding An, Ph.D. Harvard Medical School Boston, MA Symbiotic bacteria-mediated protection in ulcerative colitis

Eric Campbell, Ph.D. University of Colorado Health Sciences Center Aurora, CO Epithelial transcriptional imprinting and the coordination of colitis resolution

Bindu Chandrasekharan, Ph.D. Emory University Atlanta, GA Role of Neuropeptide Y in the pathogenesis of inflammatory bowel disease

Xinhua Chen, Ph.D. Beth Israel Deaconess Medical Center Boston, MA Protective roles of commensal bacteria cell wall components in Clostridium difficile infection

John Garber, MD Massachusetts General Hospital (The General Hospital Corp.) Boston, MA Cytoskeletal regulation of intercellular junction integrity and intestinal epithelial barrier function

Louise Glover, Ph.D. University of Colorado Health Sciences Center Aurora, CO Regulation of epithelial innate immunity through HIF-mediated autophagy

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Timothy Denning, Ph.D. Emory University Atlanta, GA Role of IL-36g in the pathogenesis of IBD

Edwin deZoeten, M.D., Ph.D. University of Colorado Denver Aurora, CO Targeting heat shock factor 1 in intestinal inflammation and T cell differentiation

Scott Durum, Ph.D. National Cancer Institute Frederick, MD Treatment of experimental IBD with L. lactis- expressing IL-27

Stefen Feske, M.D. New York University School of Medicine New York, NY CRAC channels in Th1 and Th17 cells as mediators of colitis and therapeutic targets

Mark Frey, Ph.D. Children’s Hospital, Los Angeles Los Angeles, CA NRG4 Regulation of colon epithelial cell survival

Kasper Hoebe, Ph.D. Cincinnati Children’s Hospital Medical Center–Research Foundation Cincinnati, OH T cell-specific lysosome dysfunction as a primary cause of IBD in Gimap5sph/sph mice

Ivaylo Ivanov, Ph.D. Columbia University Medical Center New York, NY Role of intestinal antigen-presenting cell subsets in Th17 cell induction by commensal bacteria

Ronald Marchelletta, Ph.D. The Regents of the University of California, San Diego La Jolla, CA Protein Tyrosine Phosphatase N2 (PTPN2) negatively regulates Claudin-2 by modulating Matriptase-1

Craig Maynard, Ph.D. The University of Alabama at Birmingham Birmingham, AL Regulation of IL-10 expression by intestinal T cells

Eoin McNamee, Ph.D. University of Colorado Denver Aurora, CO HIF-dependent regulation of effector TH1 CD4+ T cell in inflammatory bowel disease

Amanda Ramer-Tait, Ph.D. University of Nebraska-Lincoln Lincoln, NE Impact of Escherichia coli colonization on susceptibility to inflammatory insults

Cary Sauer, M.D. Emory University Atlanta, GA Magnetic resonance enterography to monitor pediatric Crohn’s disease

David Shih, M.D., Ph.D. Cedars-Sinai Medical Center Los Angeles, CA The roles of IBD-associated genes ATG16L1 and TNFSF15 in bacteria-mediated gut mucosal inflammation

Jr-Wen Shui, Ph.D. La Jolla Institute for Allergy & Immunology La Jolla, CA The protective function of HVEM in colitis pathogenesis and mucosal host defense Ronen Sumagin, Ph.D. Emory University Atlanta, GA Functional consequences for neutrophil interactions with apically expressed intestinal epithelial ligands

Shipra Vaishnava, Ph.D. UT Southwestern Medical Center Dallas, TX Bacteria-regulated vitamin A metabolism in the intestine

Elizabeth Wohlfert, Ph.D. State University of New York, University at Buffalo Buffalo, NY Deciphering the mechanism of how GATA3 controls the fate of regulatory T cells at mucosal sites

Senior Research Awards

David Artis, Ph.D. University of Pennsylvania Philadelphia, PA Epigenetic regulation of IBD

Ezra Burstein, M.D. UT Southwestern Medical Center Dallas, TX COMMD proteins and the regulation of inflammation in IBD

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D. Brent Polk, M.D. Children’s Hospital, Los Angeles Los Angeles, CA Protective effects of epidermal growth factor receptor (EGFR) signaling in colitis-associated cancer

Carla Rothlin, Ph.D. Yale University School of Medicine New Haven, CT Role of TAM receptor signaling in intestinal mucosal homeostasis

Phillip Smith, M.D. University of Alabama at Birmingham Birmingham, AL Mechanism for CMV-induced exacerbation of inflammation in IBD

Adrian Ting, Ph.D. Icahn School of Medicine at Mount Sinai New York, NY Role of necroptosis in IBD

Stephen Tomlinson, Ph.D. Medical University of South Carolina Charleston, SC Role of complement in inflammatory bowel disease

Monika Vig, Ph.D. Washington University School of Medicine St. Louis St. Louis, MO To understand the mechanism of development of Crohn’s disease in CRAC channel-deficient mice

Melissa Wong, Ph.D. Oregon Health & Science University Portland, OR Macrophage-epithelial fusion in Crohn’s disease

Bana Jabri, M.D., Ph.D. The University of Chicago Chicago, IL Role of epithelial Hsp70 and intestinal immune homeostasis and colitis

Algirdas Jesaitis, Ph.D. Montana State University Bozeman, MT Human neutrophil formyl peptide receptor regulation in IBD

Steffen Jung, Ph.D. Weizmann Institute of Science Rehovet, Israel Analysis of intestinal dendritic cell functions and their role in homeostasis and gut inflammation

Dennis Kasper, M.D. Harvard Medical School Boston, MD Novel therapeutics derived from the commensal microflora for treatment/prevention of IBD

Randal Kaufman, Ph.D. Sanford-Burnham Medical Research Institute La Jolla, CA Endoplasmic reticulum stress and the unfolded protein response in inflammatory bowel disease: A novel mechanism of pathogenesis and therapeutic target

Daniel Mucida, Ph.D. The Rockefeller University New York, NY Development and function of intestinal CD8alpha+CD4 T cells

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Friends of CCFA

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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 FoundationAbbott Laboratories Employee Giving CampaignAbbVieRobin & Barry AbelsonAbt Electronics and AppliancesHoward AdlerWarren & Sonia AdlerAetna Steven M. Agin Memorial Fund Jeff AikenAimbridge Hospitality Akerman SenterfittAkin, Gump, Strauss, Hauer & FeldThe University at Albany Foundation Albany Gastroenterology Consultants, P.C.Margaret Alkek Williams Berk AllenAllergan Foundation ALMO Corporation Henry AlpertBonnie & Charlie AlterAmerica’s CharitiesFred C. and Katherine B. Andersen FoundationScott & Monica Anderson Andrew C. Carlos Family Investments, LLPLindsay & Richard AnfangAptalis PharmaArgonne National LabJoseph ArgusMaya Arisom John Scott & Jana Arnoldy

Gil Aronson Atlanta Attachment Co.The Atlantic Club Debra AugustAurora Health Care The Ayco Charitable FoundationPaul AzoulayBae SystemsMichele & Scott BaenaWilliam & Mary Jane BagbyRoger & Lori BahnikDavid & Gwen BakerHoward & Rachelle Balaban Arvindh & Lisa BalakrishnanBank of America Bank of America FoundationBank of America United Way CampaignBarbara & Fred Miller Family Foundation Richard BarkettDeb BarnardMark BaronRonald BaronNeil BarrStanley BarrySandra Atlas Bass Bassler Family Foundation, Inc.BBL Construction Services BDO Seidman, LLPWayne BeachamChristopher BealeBeth BeattyMichael BebonJanine Behrman

Katherine BellissimoTanisha BellurLouise & Leo BenatarRivka BendelsteinCharles BenditThe Frances & Benjamin Benenson Foundation, Inc.Rolf Benirschke Legacy Foundation Jeffrey BergerMichael BergerPaul BergerBerkowitz Pollack Brant Advisors & Accountants The Berman Family Trust Ed & Claudia BernsteinBernstein Family Charitable FoundationBerr Family Foundation Inc.C.E. Berry’s Patch, LLCLawrence BeshelBeta Sigma Phi InternationalMonarch BeverageBIA CaresAngela & Rob BiggarBillian Family Charitable FoundationChristopher BillmeyerBilzin Sumberg Baena Price & Axelrod L.L.P.Vicki & Rick BirdoffBishop Family FoundationDarlene BissoHoward BlattIrma & Jon BlaunerEmily BlavatnickMichael Blechman

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Jerry BlickmanAdam BlindermanBloomberg L.P. Irene BloomsteinNicole BlueBlue Cross Blue Shield Blue Cross Blue Shield of TexasFelice & Richard BlumbergSylvia BlumeEmployee’s Community Fund of the Boeing CompanyKathy Boggan James & Judy BolinThe Bone Family Anthony BongiornoJohn BorkeyM. Taylor BosargeBoston FoundationEthel Wilson Bowles and Robert Bowles Memorial FundJudy & James BoyleTim BoyleJulie BrandesSaul Brandman Foundation Kevin BraniganAbbey BravermanMaura & Joseph BreenBrigadoon Financial, Inc The Harry B. & Jane H. Brock FoundationJoshua BroderRobin BrodyBrooklyn Nets Travis BrownMichael BrownNancy & Howard BrownAndrew BruckerElizabeth Bruns, Inc. Kimberly BucciDonald & Linda BurkeBurklund Distributors, Inc.

The Byrne FoundationC.L. King & Associates Patricia CacioppoCalifornia Bank & TrustJim CampbellThe Caring FoundationGerard CarlucciCarolina Digestive Health Associates PA Chase & Livi CarpenterGuy CarpenterRita & Frank CastagnaCenegenics Medical Institute CenterPoint EnergyIrwin ChafetzEvan ChafitzEugene & Roslyn ChaikenMatt & Lisa Chanoff Chaplin’s Automotive GroupEdward Charles Foundation Charles Schwab Charlotte Gastroenterology & Hepatology PLLCCharm City RunThe Bank Of New York MellonNaomi CheatumUniversity of ChicagoChico’s Retail ServicesChildren’s Charities, Inc Church & Dwight Employee Giving FundRose & Don CiampaCincinnati Children’s Hospital Medical CenterLouise CincottaCitizens BankCity National Bank Sandra ClarkJohn ClearyUniversity Hospitals of Cleveland The Jewish Federation of Cleveland

Cleveland Clinic Clive, Davis, & Mann, LLCCoca-Cola Bottling CompanyHarvey CohenAllison & Craig CohenMiller Druck Specialty ContractingMartin & Kelli Cohen FeinChris & Becky ColletteColon & Rectal Surgery AssociatesThe Community Foundation for Greater Atlanta, Inc.Community Health CharitiesCommunity Health Charities– National OfficeCommunity Health Charities of CaliforniaCommunity Health Charities of ColoradoCommunity Health Charities of ConnecticutCommunity Health Charities of IllinoisCommunity Health Charities of Kansas and Missouri, Inc.Community Health Charities of MaineCommunity Health Charities of MarylandCommunity Health Charities of MinnesotaCommunity Health Charities of National Capital AreaCommunity Health Charities of NebraskaCommunity Health Charities of NJCommunity Health Charities of North CarolinaCommunity Health Charities of OhioCommunity Health Charities of PennsylvaniaCommunity Health Charities of Tennessee, Inc.

Community Health Charities of TexasCommunity Health Charities of VirginiaCommunity Health Charities of WA StateCommunity Health Charities of Wisconsin–Main OfficeCommunity National Bank Confidence Foundation Connecticut GIMichael ContilloRodney CookLeon CoopermanLeon & Toby Cooperman Copeland Family FoundationDenise CordeiroCoronado Biosciences, Inc.Covenant Foundation Gardner Cowles IIIWendy CoxWilliam CriswellGerald CroanJohn & Carolyn CrossonTimothy CrossonDaniel & Ellen CrownSara Crown StarHarry & Sylvie CrumHarry & Rosanette CullenDonna & Douglas CurlingLauren CurtinThe Cutler Family Helen Cyker The Dallas FoundationSean DanyBen DarnellBenjamin & Frances David FoundationThomas & Nancy DavidsonDrew DaviesAnn & Jay Davis Leah & Richard Davis

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Scott Davison Patricia De GanahlTama & Paul DeitchDelta Air Lines, Inc.Sandra & Nelson DeMilleJ. Derenzo Company Harold and Helen Derfner FoundationMarcia & Doug DeVosPeter DeWalt Diamondston Foundation, Inc.George DicksteinGary DiehlDietz & WatsonFilomena DisistoCorrine L. Dodero FoundationMichael & Patti DodsonBernice DrapkinDream Foundation (Kiki & Steven Esrick & Family) Joseph Drown FoundationWendy & Jonathan DulmanJonathan DulmanEastern Bank Charitable FoundationEdmunds & AssociatesEisenhower Medical CenterElan PharmaceuticalsElectroImpact, Inc.Ellison Technologies Thomas ElmezziSonja ElmoreLeonard EnglanderLara Englebardt MetzMitchell EnloeEnterprise Holdings Foundation The Lester M. & Sally Entin FoundationEpic Systems CorporationEssential Power FoundationMaury Ettelson Wesley Evans

Richard EvoyExcellent Home Care Services F.M. Kirby FoundationFairway Group Central Marcy & Art Falcone Joan Falk Wells FargoEd Farley & Sheila Wiedman-Farley Fatemeh FarmyFederal-Mogul CorporationJennifer FeikinFeil Family FoundationHill FeinbergMyron Feinberg Fund at The San Diego FoundationDenny & Amy FeitGregg FeltonMaxwell FeltonRobert Fendrich Family Trust Lori & Howard FenstermanFerring Research InstituteThe Feuerring FoundationFidelity Charitable Gift FundFifth Ave of L.I. Reality Assoc.– Rita and Frank Castagna David FineFine Foundation–Milton & Sheila Fine Lawrence & Barbara FinkelsteinFinkelstein Family Foundation First Resource Development Company FirstTeam Real EstateMark FisherBrandon FlowersPatricia ForbesRegina & Gordon FordNancy & Ronnie FordJim FrankBruce & Dale FrankelFremont Emergency Services

Fried, Frank, Harris, Shriver & Jacobson LLPVirginia Friedhofer Charitable TrustLester & Laurie FriedmanFriedman Supporting FoundationKen & Nancy FullerThe Funderburg FoundationPatty & Alex FunderburgMorris and Gertrude Furman FoundationFYIF, Inc.Gables Engineering David GantosDiane & Barry GanzThe GE FoundationIrwin & Joan Geduld Family Foundation, Inc. The Gelber FoundationGEM Realty Capital GenentechGeneral Constructors Inc. Fredric GershonGestalt Assoc., Inc./Business of PeopleRichard GeswellGI Associates, LLCGiant Eagle Foundation New York Football Giants, Inc.Edward & Kimberly GibbonsVance & Deborah GibbsJeff GilbertShaldine & Richard GillmanSloane & Marc GillmanLaurence GinsbergGlen GiovanucciGive With Liberty Employee DonationsGiven Imaging, Inc.John GlaserThe Glaser Progress FoundationGlassratner Advisory & Capital Group

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Jeffrey GuralEric B. Gurwin Gurwin Family FoundationJill HaberKeith HallTara HallHalpryn Family Foundation IncHansen, Jacobson, Teller, Hoberman, Newman, Warren, Richman, Rush & Kaller, LLPThe Joshua & Marjorie Harris Family FoundationTracy & Natalie Harris-BrownLouis Harrison, M.D. & Ilene Harrison John & Jacqueline HasenauerMary Sue HawkShellon HaynesGina HeadHealthPartnersHEB Abbe and Al HellerJill HellerHellman Foundation The Leona M. and Harry B. Helmsley Charitable TrustBarbara HermanElizabeth HernandezElliott HershbergEvelyn HeywardHFTP Front Range ChapterHighmarkHill Crest FoundationRochelle & David A. Hirsch FoundationWilliam HirschbergMargaret HivelyHoag Memorial Hospital Presbyterian Geoffrey HobartRobert & Jill HobermanFamily of Sam Hodes Jeffrey & Christina Hoffmann

Glen Oaks Robert & Candy GlickmanJoel & Brenda GlickmanSidney & Cheryl GluckCari GodboisRon and Judy Gold Family FundGerald & Nancy Goldberg Paul GoldenbergSteve GoldingDiane & Mark GoldmanLisa and Douglas Goldman FundHerman Goldman FoundationCarol GoldsmithLisa & Robert GoldsteinElaine & Michael GoldsteinGoldstein Family FoundationSteve GoodmanVicky Goodman Jim & Andi GordonGotham Technology Group John GotschallJill & Tom GottliebLois GoulstonPamela GravenGraybar Electric CompanyGreater New York InsuranceGreater Twin Cities United WayGreatergiving Greg GreenbergMichael GreenbergGreenberg Traurig, LLPGreenspun Family Foundation The Edmund J. & Afton S. Greenwell FoundationJosh & Lisa GreerKenneth GriffinVicki and Michael Gross Family Foundation, Inc.Grosvenor Capital ManagementJoe GuggerBetty Guiney

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Chris & Natalie Holcroft Tim HolinerMark & Lori HorneKaren & David HornikSeth HorowitzRalph and Genevieve B. Horween FoundationHoward Hanna Real Estate ServicesDavid HoweSerge Hoyda, LLCJohn & Betty Hrncir Shirley HulseIBMImedex USA, Inc.Stamco Industries, Inc.Infinity Elevator Company Intercontinental Hotels GroupPatricia IsmailRobert IvanhoeJ&J Healthcare Systems Karl JacobJune JacobsJames & Judith K. Dimon FoundationJanney Montgomery Scott LlcJanssen Biotech, Inc.Robert & Ellen JasperJendoco Construction Corporation Rainin Jennifer Catherine JirakJoe JohnsonDaniel & Penny JohnsonMichael Johnson Johnson & JohnsonJohnson & Johnson Family of Companies Matching Gift ProgramDave & Jill JonesJPB EnterprisesLisa & Norm Judah JustGiveJeffrey & Sandra JustinAndrew & Shari Kairey

Charlotte KaitzLinda Tallen & David Paul Kane Educational & Research Foundation Robin Kaplan Memorial FundBarbara & Leo KarasJudi & Joey KarasFred E. Kassner Family Foundation, Inc.Shelby & Shoney KatzHiman Brown Charitable TrustOrene & Robert KearnJackie KempnerMichael KerrZachary & Jessica KerrGene & Sue KestenbaumKeybank FoundationHussein KhalifaDouglas KingThe Kirklin ClinicLois & Ken KirschenbaumConstance KittnerJohn & Lenora KleinJoyce & Robert KleinerRichard KleinmanArnold KlingDonald KliseK’NEX Industries Craig Koenigsberg–CLKDenise KokalesScott KordeStuart & Claire KoshnerKo-so FoundationKoss Corporation Keren & Jeff KotowitzBen KovlerPatricia KozuchKPMGRonald KramerThe Ron Krancer Family Kurtis & Jill KrentzJodi Krieger Yellen

Barry KringsteinBen & Judy KronickDebrah KrulewitchMichael KrumbeinWilliam KussellPaul LacarubaLadenburg Thalmann Financial Services Biana LansonRobert & Judie LasserRobert Lasser Estee LauderGary Lawson Dr. Matt & Judye Leavitt– Leavitt Family Foundation Josh LeavittTower Charitable FoundationAmy & Adam LeibnerMaryellen LeisterStuart & Deborah Lempert Marc LennerEugene LeoneSuzanne LeRoyNina LeveneClaire LevineThe Le Vine FoundationRick LevinsonDavid LevyJames Lewis, M.D.Ellen Li, M.D. Nikki & Rob LibertoElizabeth & Matthew Lieberman The Lindner Family Barry & Rhonda Lippman Danette & Hank LittleJohn & Terry LlamasDavid & Nance LodgeLoeb & LoebLois & Andrew Zaro Charitable TrustLordon ManagementJeffrey Loria

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Cleo & Ruth MooreScott & Gayla MooreRichard MorasMarie & Mark MoroneyRobert & Kimmey MorrisAlan & Faith MorrisMorris Family Foundation Mark & Marsha MorrowMotherToBaby OTISRobert & Marci MurdockHilary & Bruce MurrayAlan MurrayAndrew MuserAlice MuskovitzMyevent Com Francine & Laurance NaginNagin Foundation Inc. Carol & Bob NamoffAlbert NassiNational Basketball Association Arco National Construction CompanyNational Philanthropic Fund NBTY Helping Hands Jeffrey & Tessie NedelmanJay NeveloffThe New York Community TrustSamuel I. Newhouse Foundation Inc.Robin & Chip Nielsen–In honor of Amy Nielsen Nigro Companies Nike, Inc Robert NoelkeNorth American Title Insurance CompanyNorth Easton Savings North Shore Gastroenterology & Endoscopy Center Novant Health Foundation OCI Chemical Corp. Ashley O’ConnorOhio GI

Pauline Arama-Olsten & Stuart Olsten Kiwoba Omiya-AllaireThe Orchard Farm FoundationThe Oregon Clinic David Orentreich Family FoundationThe Orentreich Family FoundationMichael & Judy OrkinR. Scott OrnsteinOrtho Biotech Clinical Affairs, LLC– Johnson & JohnsonJohn Owen Kathryn May Paben Family Charitable TrustJane Page Design Group Sheri Ellison & Michael Page James PalmaEdward & Pamela PantzerPapé Material HandlingLisa & James PappasJames PappasPartners Healthcare SystemPatriarch Family FoundationMelroy PattersonKathleen & James L. Patton, Jr. Peoples Natural Gas Kendrick PerkinsPerry Ellis International Nadine & Sidney PertnoyThe Lauretta K. Peters and Richard R. Peters Charitable FoundationThe Pevaroff Cohn Family FoundationPfizer Foundation Matching GiftsPfizer Inc.Ben PickeringCynthia & Andrew PickmanRobert & Carroll PierceRobert PileggeCarole Pittelman

Paul & Penny LoydStuart LubowAllison & Craig LuckmanLori LupiniMacDonald-Peterson Foundation Harry & Cora Sue MachCheri Machado-KnappTami MackMacy’s FoundationPamela MaddoxMark MaddoxBeth Madison Madison Square Garden Thomas & Sarah Mahon Family Charitable FoundationAndrew MalikGabi MandelNathan MandelbaumGlenda Rc MannTim ManningJohn MarcianoJoel MarcusStephen & Carol MarcusDeborah H. and Jeffrey H. MargolisRandy MarkowitzNancy MarxUniversity of Maryland Medical Center Jared MasarekLenore Maslia Matrix PDM Harold MatznerHercules Corp.McCormick & CompanyMcCoy Workplace Solutions Michelle McCreaAshley O’Connor McCready & Mike McCreadyMcCurdy Family FoundationJohn P. McGovern Foundation Matt McKee

Peter McKeeMcKesson FoundationLance Robert McLendon FoundationRobert McParkerThe Medallion Foundation MedVet AssociatesDonald & Gloria MelchingMemorial Hermann Health System Mercedes-Benz Dealers of Greater HoustonMercedes-Benz of Beverly HillsMerck Partnership for Giving CampaignMerit PartnersThomas MessinaMetropolitan Realty Group LLCMFT InterestsDebra MichielsMicrosoft CorporationMiddle Tennessee Electric Membership CorporationJerome MillerDiane MillerKean Miller, LLP Bryan Mills Mills Family Charitable Foundation Stephen MilsteinAndrew MilsteinMilton M. Ratner FoundationMinnesota Gastroenterology, PA Larry & Susan MishJeanne MitchellShelby ModellMitchell & Robin ModellAbby ModellDell Cloud Client ComputingChristy MolaskyDaniel MonossonDenise MonteleoneMonument StaffingLes Moonves

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Mike Plant & Associates Inc. Louis & Lori PlungMelvin PlutskyGary PodellPeggy Pollock FoundationMichael PolskyJanet & Elvin Price PricewaterhouseCoopers Bettina ProberPrometheus Laboratories Inc.Patrick PurcellPuyallup Tribe of IndiansQuality BrandsQuicken LoansJames & Melinda RabbArthur RabinMary & Bruce RabinerMartin RabinowitzCriswell Radovan, LLCThe Stewart J. Rahr Foundation Jan & Claudia RaskRaymond James & Associates Lisa RechlerThomas H. Redmiles Foundation, Inc.Shari RedstoneMadeleine RedstoneSumner RedstoneThe Regenstein FoundationMiguel Regueiro, M.D. Ilana & Samuel ReichRobert A. Reiss, M.D. Renaissance Companies Retirement Planners International Reynolds AmericaRich Foundation, Inc.Rifenburg Construction Alberta RifkinGerry RittenbergStefano RizzottoCarol Roaman

Jeff & Laura Robbin Jewelry by Molly RobertsScott & Debbie RobinsonC.H. Robinson International Rochester Area Community FoundationArthur RodbellPhyllis & Sidney RodbellThe Roddenberry Foundation Janice & David RodkinLeslee RogathThe Rogers FoundationMarcia Rolfe-MishaanRose Community FoundationDavid & Sherry RosemanRosenberg Family Foundation, Inc.Dulcy & Jerry Rosenberg Chip Rosenbloom The Mary and Emanuel Rosenfeld FoundationIrwin & Suzanne Rosenthal Daniel RosettBruce RosnerSandy & Fred RothLouise & Edwin Rothberg The Pamela and Stuart Rothenberg FoundationThe Richard Rothman Family FoundationRowan Family Foundation Lee & Linda RubinLauren & Mark RubinWilliam RudinGeorge RuhanaRyan, Swanson & Cleveland, PPLCSelma RyaveJohn SabelThe Safeway FoundationSaint Arnold Brewing Company Paul SalernoSalix Pharmaceuticals, Inc.

Sharon & Dave SalmanSaltchuk Resources, Inc. Johnie SalvaggioDavid SamsonThe Notsew Orn Sands Foundation Santarus, Inc.Rose & Shelby SantinHerbert SapersteinNorton SarnoffEric SchapiroBonnie & Gary ScharfGeoffrey SchechterSchenker Family FoundationJean SchepersEllen Scherl, M.D. Anton SchiffLyn & Carl SchmulenMark & Lisa SchneiderSteve SchnurmacherJay & Jeanie Schottenstein FoundationIlene SchwartzMalcolm SchwartzRobert J. SchweichJay & Joe ScobyThe Seaport Group Sally & Larry SearsSeattle Children’sJack SebastianSEFCU Karen & Frank SegallArnold SeidelCaryn SeidmanVivian SerotaBarry ShainEllen & Steven ShapiroEmily & Louis Shapiro Gina & Sam Shapiro Lester & Edna Shapiro Family Foundation

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Valassis Direct Mail Richard & Elaine Valente Wayne & Gladys Valley Foundation Van Van AukenEddi & Wendell Van Auken Donald Van IngenJennifer VargasJan VasysVeredus Corporation Scott & Jody VersonClifford VinerJill VinerVintage Rallies, Inc. Virginia Mason Medical CenterVWR Charitable Foundation Marie & Richard WackenhutThe Waggoners FoundationStephen WagnerSteve Waldner–Waldner Business EnvironmentJudith & Ed WalkTim & Mary WalshMatthew WalshRichard WalshThe Walsh FoundationFloyd Floyd & Barbara Warkol Charitable FoundationWarner ChilcottCarol & Jake WatralWBC Group, LLC Walton Street CapitalThe Weckesser Family Elaine WeilerBernice Weinrib (Podell)Michael & Sheryl WeisbergCathy WeissAaron WeitmanLinden WelchWells Fargo Wells Fargo Asset Based Lending Wells Fargo Bank

Robert & Meryl TillisA. Richard TischlerTJM Investments Kay TornborgCarolyn Towbin TradewebJonathan TrambertDohn Trempala Tri City RentalsLawrence TricerriTrigran Investments, Inc.TriHealth/Bethesda Hospital TriHealth/TDIDonald TrumpThe Tudor Foundation Paul Tudor JonesTuffli Family FoundationTulalip Tribes Charitable Fund Carmella & Peter TullyVanessa TurnbullChristine TurnbullTurner Construction CompanyBetty & Jess B. TutorUBS UC HealthUC Physicians UCB, IncUCSD Health Systems Blaine UdellUNC Healthcare Under Armour Athletic Apparel David & Lynda UnderwoodIBD Program of the Underwood Center for Digestive Disorders at Houston Methodist HospitalUnited Way of Allegheny CountyUnited Way Valley of the SunUniversity of Miami UPMC Health Plan UPS Foundation, Inc. USAA

Law Offices of Robert Sharon, P.C.K. C. Shasha Charitable FoundationKay & Richard ShermanShire Shire US, Citibank DelawareMichelle ShopennNorman & Deborah ShubShubin & Bass, P.A.Beibut ShumenovRandi SidgmoreSigma Phi Gamma Tiya SilvaSusan & Scott SilverAdrianne SilverIra SilvermanAlexis & Joe SilvernaleHarry SilversteinSimmons Bedding Company The Sidney, Milton & Leoma Simon FoundationCarol SimonAlbert & Judith SimonLisa & Jerry Simon Michael SimsKaren SingerSkadden, Arps, Slate, Meagher & Flom, LLPTed SlavinDon SlutzkyScott Snapper, M.D., Ph.D.Beatrice Snyder Foundation Capital Solebury Capital GroupDavid SolomonThe Lawrence & Lillian Solomon Fund, Inc.Paul SomervilleSoros Fund Charitable Foundation Matching Gifts ProgramTracey & Howard SosnikJohn SpeerJerry Speyer

William Stamps Farish Fund Diane StanbroSteven StarkJoseph F. Stein Family Foundation Inc.Bonnie & Steven SternEmanuel & Elizabeth SternThe Sternlicht Family Foundation, Inc.Steven Swarzman Stewart Title Guaranty CompanyHeidi & Chris StolteRoger StoneMaximilian StoneStrasburger & Price, LLPGeorge & Irene StratisElisabeth StrausMartha Washington Straus– Harry H. Straus Foundation, IncLynn & Edward StreimRobert StrigleHans & Nancy StrohmerSubaru of AmericaSunbelt Holdings Swagelok CompanyValerie SwarbrickSteven SwarzmanHoward & Michelle SwarzmanMichele & Steven SweetwoodFrancisco Sylvester, M.D.Denise & Mark TabbuttTakeda Pharmaceuticals U.S.A., Inc.Jodi & Paul TartellTD Bank Kenneth Tedaldi FoundationBrian Teichman–Taping for the BlindJoAnn & Jonathan TerdimanTeva PharmaceuticalsTexas Children’s HospitalTexas Digestive Disease ConsultantsFlora L. Thornton Foundation

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Wells Fargo Community Support CampaignWells Fargo FoundationWells Fargo Capital Finance Inc. Harry WendroffSolomon WerdigerBruce WesselWest Penn Allegheny Health SystemWestern Oil Company Joseph E Weston Public Foundation Anthony Westreich CompanyMitch & Alicia Widom Glenn & Ellen Widom Wilbur May FoundationSherri & Rob WildsteinJohn Wiley & Sons, Inc.Stuart WilkinsGeorgene & Steve WinickWishlist FoundationWm. Sopko & Sons Co.Rick & Nadine WoldenbergDouglas WolfAdam WolfBeth Wolff Realtors David WorkmanMary Aiken WrightYablon FoundationThe New York Yankees Foundation Ben YarbroughMark ZankelPeter ZappalaTiffany ZellerHavva Charm ZellnerLawrence ZimmermanTeri & Tony ZingaleCaryn ZuckerEva & Bruce Zwigard

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

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Founders Society

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Marie AlexanderIsabel AndersonMargaret Ashburn Trust Lois BaileyNancy BakerKevin BarnesRaymond BattilanaGrace BenediktEstate of Julius Berkowitz Mary BerryRobert BlankStephen BlankTim BlankEstate of Dorothy Bliley Dave BloodSusan BorzenskiBryce BreitensteinJill Brenneman

Dona BrowneRona BudovitchEstate of Charles P. Bukowski Estate of Sidney H. Bull Lander BurrJoan CanfieldJennifer ChristensenLaura CliffordRuth ColtenPhil ConleyMichelle CovingtonLaura CridlebaughBetsy CulbersonPhil CulbersonJohn DaytonEstate of De Barbieri Vera DeutschEstate of Anna Druck

Kenneth DunstIrene EizenEstate of Elizabeth Erasmus Maury EttlesonMary Jane EvansThe San Diego Foundation Myron Feinberg Endowment Fund Karen FindoraAlan FinnDean FiorelliEstate of Ruth Fleisher Richard FrankelWilliam FrankensteinMary FranklinLinda FraserMichele FreadmanBrenda Fudell

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:

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Estate of Ruth Furman Estate of Jules Furth Arlene GalbertRobert GarmanEstate of Charles Geist Leonard GilmanDeborah GoldbergEstate of Henrietta Goldberg Donald GoldfarbMona GordonRandi GordonMiriam GottlibbThe Estate of Marion Gould Greg GreenbergMarcia GreenburgLorri GreifLillian GuyBruce HartzmarkJudy HauserRobert HawkMary Sue HawkDaniel HawkinsDeanne HillThe Hirsch Family Donor Advised Philanthropic Fund Hanna HombordyNancy HomeyerWilliam HomeyerGerald HonlJean HoughRichard IvesLillian IvesSanford KahnAudrey KatzMark Kaufman

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Dawne KaufmanMark KaufmanThe Louis J. and June J. Kay Foundation, Inc. Millicent KellnerBeth KingSteve Koonin Michael Koss Renee Landau Eric Landau Gloria Langos Patricia LaPedus Karen LaRocca Estate of Pauline Leibow Irma Leon Judith Ludwig Levine Arthur & Judith Levine Ronald Levy Michael Libys David Linemeyer Lucia Loding Adeline Luckman Juanita Ludke Harvey Luterman Rusty Maddox Estate of Sylvia Malawsky Marc Marasco Margaret Marasco Edna Marcus Thomas Martin Carolyn Martin The Richard Ives & Lillian Ives Revocable Trust Nancy McNabb Henry Meyer

Cynthia Monter Noel Moore Martha Morrison Pattie Moxham-Fisher Charles Munsey Bob Nieder Barbara Nieder Marie Nilsson Annclaire Oscar Sarah-Katharine Owen Renee Parente Faye Parham Eleanore Patterson Santos Perez Neil Pessin Oscar Peterson Christine Pitt Kathryn Pizza Christine Pollock Mark Pope Rex Rathbun Estate of Mary Ellen Reedy Rosalyn Richman Seymour Roberts Robin Roger Mona Rosenberg R. Warren Ross Carol Rudoff Selma Ryave Carolyn Sampson Shirley Schreiber Ron Schwartz Robert Sexton Carol Sexton Judy Sigal

Gary Sinderbrand George Smyth Sheldon Sokol Seymour Sperling John Spiecker Pamela Staats Sylvia Steinbrock Eugene Taubel Beverly Taubel Jane Thomas Julie Townsend Felicia Traub Michael Tronzo Jeff Tupper Donald Van Ingen Lawrence Vandervoorn Vivian Vandor Salvatore Varveri James & Kathryn Vaughan Sara Jane Victor Jeffrey Ward Rene Warren Joseph Weisel Arie Weissman Estate of Marlene R. West Ray Whitaker Nancy Wiltgen Linda Windsor John Wine Mark Yanochko Phoebe Yochim Charles Yochim

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Corporate Sponsors and Supporters

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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 CircleWe 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.

AbbVieAptalis PharmaCoronado Biosciences, Inc.Janssen Biotech, Inc.Pfizer Inc.Prometheus Laboratories Inc.Salix Pharmaceuticals, Inc.Santarus, Inc.ShireTakeda Pharmaceuticals U.S.A., Inc.Warner Chilcott

National Event SupportersThe 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:AbbVieBridgestone Americas Tire Operations, LLCJanssen Biotech, Inc.ShireSantarus, Inc.

Team Challenge:AbbVieDelta Air Lines, Inc.Santarus, Inc.ShireTakeda Pharmaceuticals U.S.A., Inc.

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2013 Financial Statements

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ASSETS

Cash and cash equivalents

Pledges receivable, net

Bequests receivable

Prepaid expenses and other assets

Investments

Reinsurance contracts

Charitable remainder trusts

Fixed assets, net

Total assets

LIABILITIES AND NET ASSETS

LIABILITIES

Accounts payable and accrued expenses

Research grants payable

Deferred rent

Deferred revenue

Capital lease obligation

Reinsurance contracts

Total liabilities

Commitments

NET ASSETS (DEFICIT)

Unrestricted

Temporarily restricted

Total net assets

Total liabilities and net assets

2013 2012

$ 3,229,003 $ 3,988,534

6,316,978 6,327,452

141,029 391,750

1,750,928 1,503,799

12,014,342 9,800,921

351,834 387,975

317,709 348,730

2,081,832 909,936

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

$ 2,175,424 $ 1,822,728

13,742,189 14,431,955

177,269 115,838

465,050 500,000

176,350 -

351,834 387,975

17,088,116 17,258,496

1,342,935 (822,331)

7,772,604 7,222,932

9,115,539 6,400,601

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

Statement of Financial PositionAs of December 31, 2013, with comparative information for 2012

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CONTRIBUTIONS, GRANTS, OTHER INCOME AND SUPPORTContributions and grants:

Contributions and grants from individuals, foundations and corporationsContributed services and airtimeSpecial events revenue Less: costs of direct benefits to donors

Net special events revenue

Federated campaigns Bequests

Total contributions and grants

Other income:Interest and dividendsNet realized and unrealized gains on investmentsFederal grant revenueRoyaltiesChanges in gift annuities and remainder trust valuationsOther

Total other income

Total contributions, grants and other income

Net assets released from restrictions Total contributions, grants and other income and support

EXPENSESProgram services:

Research Health professional education and public information

Total program services

Supporting services:Management and general Fundraising

Total supporting services Total expenses

Changes in net assets

Net assets (deficit), beginning of year

Net assets (deficit), end of year

Statement of ActivitiesFor the year ended December 31, 2013, with comparative totals for 2012

2013 Temporarily Restricted

2012 Total Unrestricted Total

$ 8,670,003 $ 14,361,362 $ 23,031,365 $ 23,438,727 11,277,878 - 11,277,878 4,040,031 32,783,254 - 32,783,254 31,974,506

(7,420,525) - (7,420,525) (7,318,045) 25,362,729 - 25,362,729 24,656,461

1,508,887 - 1,508,887 1,535,948 2,844,877 - 2,844,877 342,031 49,664,374 14,361,362 64,025,736 54,013,198

119,148 - 119,148 217,168 1,727,641 - 1,727,641 478,785

354,502 - 354,502 108,756 604,378 - 604,378 563,648

- 36,128 36,128 32,175 432,355 - 432,355 204,908 3,238,024 36,128 3,274,152 1,605,440

52,902,398 14,397,490 67,299,888 55,618,638

13,847,818 (13,847,818) - - 66,750,216 549,672 67,299,888 55,618,638

18,255,285 - 18,255,285 16,811,162 34,425,979 - 34,425,979 27,396,083 52,681,264 - 52,681,264 44,207,245

7,008,487 - 7,008,487 6,596,810 4,895,199 - 4,895,199 4,626,556 11,903,686 - 11,903,686 11,223,366 64,584,950 - 64,584,950 55,430,611

2,165,266 549,672 2,714,938 188,027

(822,331) 7,222,932 6,400,601 6,212,574

$ 1,342,935 $ 7,772,604 $ 9,115,539 $ 6,400,601

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National Board of Trustees

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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:Maura C. Breen Chairman, National Board of Trustees North Falmouth, MA

Jim Lewis, MD, MSCE Chairman, National Scientific Advisory Committee (NSAC)Philadelphia, PA

Scott Snapper, MD, PhD NSAC Chair-ElectBoston, MA

Vance Gibbs, Esq. General CounselBaton Rouge, LA

Paul Salerno TreasurerMelville, NY

Richard J. Geswell PresidentWappingers 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

National Trustees:David Alberga, La Jolla, CA

Donald Burke, Langhorne, PA

John Crosson, Pacific Palisades, CA

Jennifer Feikin, Venice, CA

Lawrence Finkelstein, Philadelphia, PA

Steve Goodman, Atlanta, GA

John Hasenauer, Southport, CT

Matt Leavitt, DO, Longwood, FL

David N. Levenson, St Louis, MO

Joel H. Margolese, Andover, MA

Jeffrey H. Margolis, Newport Beach, CA

Lloyd Mayer, MD, NSAC Chair Emeritus (deceased), New York, NY

Jeffrey P. Nedelman, New York, NY

Michele Rubin, APN, CNS, CGRN, Chicago, IL

Francisco Sylvester, MD, Hartford, CT

Paul Tartell, MD, Golden Beach, FL

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