The EMSF is proud to support the Crohn's & Colitis Foundation each year.
The Crohn's & Colitis Foundation is a non-profit, volunteer-driven organization dedicated to finding the cures for Crohn's Disease and ulcerative colitis, and to improving the quality of life of children and adults affected by these diseases. It was founded in 1967 by Irwin M. and Suzanne Rosenthal, William D. and Shelby Modell, and Henry D. Janowitz, M.D.
Since its founding nearly five decades ago, it has remained at the forefront of research in Crohn's disease and ulcerative colitis, collectively known as inflammatory bowel diseases (IBD). Today, they fund cutting-edge studies at major medical institutions, nurture investigators at the early stages of their careers, and finance underdeveloped areas of research. In addition, our professional education workshops and programs, along with our scientific journal, Inflammatory Bowel Diseases, enable medical professionals to keep pace with this rapidly growing field. We are very proud that the National Institutes of Health has commended us for "uniting the research community and strengthening IBD research."
Beyond research, the Crohn's & Colitis Foundation is collaborating with healthcare providers to improve IBD quality of care, as well as educating, supporting, and empowering patients and their caregivers through patient-centric education and advocacy programs.
Total - $190,000
Take Steps Walk / General Fund - $50,500
Clinical Research Alliance - $30,000
Coping with IBD - $34,000
Power of Two - $55,500
To help understand the issues and struggles for those with crohn's and colitis, ABC Channel 13 produced the special, "The Voices of IBD". Eric's story, the Suhl Family and The Eric M. Suhl Foundation were featured. See the segment below!
Coping with Crohn’s disease and ulcerative colitis can be extremely challenging and isolating. Take Steps is a family-friendly fundraising event where patients, loved ones, friends and supporters empower and inspire each other to continue the fight against these devastating diseases. Patients and their families are able to connect with the greater IBD Community, helping them understand that they are never alone in this fight.
Funds raised from the Take Steps Walk are donated towards the general fund. The general fund focuses its spending on four key areas:
The Crohn's & Colitis Foundation prides themselves on funding only the highest quality research. They have a rigorous review process and have worked tirelessly to build a diverse portfolio of individual and collaborative research projects in high-priority areas. With an investment of more than $350 million, the Foundation has played a role in every major scientific breakthrough in IBD. Research Initiatives are developed to fill important unmet needs in Crohn's & colitis research. They are idea-driven projects that bring together multiple centers and investigators from across the country. The goal is to discover and support emerging areas of research that could impact the scientific community’s understanding of the causes of and potential cures/treatments for Crohn's disease and ulcerative colitis. Our current initiatives include the Microbiome, Genetics, Pediatric Risk Stratification, IBD Partners, IBD Qorus, and IBD Plexus.
Their research is unprecedented and has significant potential to directly transform IBD patients' well-being.
Their national and local programs and services are designed to provide patients of all ages and their loved ones with helpful information to better manage their disease while providing a supportive forum to share experiences and concerns, and connect with others.
Serving more than half a million patients and caregivers a year, their programs are designed to suit different learning styles. From in-person and online support groups to webinars and twitter chats, they deliver information in the ways patients want to be educated. Their IBD Help Center is staffed by trained, compassionate professionals who are available to answer questions by phone, email or instant messenger. They also have a number of satellite websites such as "Just Like Me" for teens and "Campus Connection" for college students. The "I'll Be Determined" website focuses on patient empowerment, and the "IBD Community" website which provides an anonymous IBD community.
The Crohn's & Colitis Foundation's co-founder Suzanne Rosenthal was passionate about advocacy and they continue with that same passion today. Their advocates are not only patients, but family members, friends, caregivers, and doctors who want to make their voices heard and see a future free from Crohn's disease and ulcerative colitis.
They advocate on both the local and national level and lobby on the Hill annually. There are 71 active members of Congress in the Crohn's and Colitis Caucus. The current areas of focus include increased federal funding for Crohn's disease and ulcerative colitis research, awareness programs designed to improve the lives of patients and legislation to limit cost of care.
Caring for patients with IBD requires highly trained experts who require ongoing training. They provide a comprehensive series of education programs and resources for healthcare professionals who work with IBD patients, including doctors, nurses, physician assistants and other allied healthcare professionals. They update professionals on the latest developments in diagnosis, treatment, and management of IBD and help develop and cultivate the next generation of experts all with the goal of improving quality of care for all patients.
Take Steps Walk / General Fund - $45,500
Three of Eric’s former doctors (Dr. Frachtman, Dr. Thompson, and Dr. Haas) recommended clinical research because this area was doing groundbreaking work in testing for treatments that could help Crohn’s and colitis patients. The Clinical Research Alliance is a network of major medical centers and smaller, local facilities collaborating on clinical studies of the management and treatment of IBD. The mission of the Clinical Research Alliance is to ask and answer clinically relevant questions that would not otherwise be studied, with the ultimate goal of improving the life of patients with IBD. Members include hospitals, medical centers, clinics, and research facilities that have developed an IBD-related research program administered by a principal investigator.
The goals of the Clinical Research Alliance are to:
A common challenge facing clinical investigators is the ability to recruit adequate numbers of patients into studies in order to obtain statistically meaningful results. It is typical that no single center has a sufficiently large patient population to answer the study question. Thus, multiple centers must collaborate in order to perform valid clinical studies. The Clinical Research Alliance provides a structure and forum for clinical researchers who focus on IBD to share and refine research ideas and create research collaborations. Additionally, the Clinical Research Alliance members can draw upon the expertise of the Crohn's & Colitis Foundation Data Management Center. The experience of the Data Management Center with IBD studies allows increased efficiency with each additional study.
The Clinical Research Alliance will ensure the most expeditious and cost-effective environment for the performance of clinical investigations in inflammatory bowel diseases. The Alliance will establish templates for research, identify patients suitable for clinical trials and patient-based studies, and standardize investigative parameters. Most importantly, the Alliance will expand the study population beyond those presenting at specialized referral centers to include not only the most extreme cases of IBD but also less severe cases that better represent the broad IBD population. This broad spectrum may permit more complete glimpses into disease onset, natural history, and the impact of the cost of care. Updates on ongoing studies will be housed on a newly-launched website:
Clinical Research Alliance - $30,000
The Power of Two program is a peer-to-peer support program for individuals seeking to talk by phone to other patients or caregivers with IBD. Peer supports are trained volunteers who have gone through their disease journey and are able to offer a supportive ear that focuses on encouragement, empathy, and navigating patients/caregivers to the Foundation resources and support programs.
Crohn's disease and ulcerative colitis, collectively referred to as inflammatory bowel disease (IBD), are also more than just physically debilitating – these conditions significantly impact patients’ mental and emotional wellbeing as well. IBD patients are two to three times more likely to experience mental health issues such as stress and anxiety, and as many as 35% of patients suffer with depression. Unfortunately, patients often struggle to manage their mental health in silence. The Crohn’s & Colitis Foundation is seeking to change this, by creating a culture where patients and healthcare providers proactively discuss psychosocial issues as part of routine IBD care.
The CCF is developing an education and awareness campaign, entitled “Coping with IBD”, that seeks to encourage and empower patients to prioritize their emotional wellbeing. The goals of this campaign include:
Coping with IBD - $34,000
Power of Two - $15,500