Ceciel Rooker joined IFFGD in July 2017 as Executive Director, bringing with her to the organization over a decade of experience in the field of functional gastrointestinal and motility disorders (FGIMDs). She has worked extensively with patients and their families as well as health professionals to improve FGIMD education and patient care.
Ceciel has taken part in advocacy efforts in the US, meeting with policy makers on Capitol Hill and providing testimony to the US Food and Drug Administration (FDA) on behalf of the millions of Americans affected by a FGIMD. She has traveled internationally to encourage patient and professional education and advance research into these conditions.
Most recently, Ms. Rooker served as Executive Director of the Rome Foundation and Managing Editor of the Rome IV project.
Meet Ceciel: Q&A with IFFGD's Executive Director
August 10, 2017
Question: What inspired you to work in digestive health and, more specifically, with FGIMDs?
Answer: When I was in my twenties, I was diagnosed with irritable bowel syndrome (IBS) and underwent extensive testing and workups for many years. Eventually, I ended up self-treating and spent years just teaching myself to live with my illness.
In 2008, I accepted a job with the Rome Foundation, the international non-profit organization responsible for developing the Rome Criteria - a set of symptom based criteria used by physicians to diagnose FGIMDs. As a patient myself, this opportunity allowed me to assist this valuable organization in further legitimizing FGIMDs. For the past nine years, I have helped to develop and manage various projects which have furthered education for physicians in this field. I found the opportunity to increase awareness and education very fulfilling; it makes my work more than a job - but an opportunity to help others like myself and my daughters (two have FGIMDs, as well).
Q: While increasing attention is being paid to FGIMD research, many FGIMDs remain poorly understood. What has been the most challenging part of working to improve awareness, education, and research for these disorders?
A: IFFGD, the Rome Foundation, and others have made a tremendous amount of headway in raising awareness for these conditions, but there is much more to do. Many of these disorders continue to be misunderstood or ignored, and both physicians and patients are often hesitant to discuss them. Increasing the dialogue and getting people to recognize the needs of this patient population has been a struggle.
Of course, once the conversation is on the table, trying to weed out fact from fiction and learn the true epidemiology (the patterns, causes, and effects of health and diseases in a population), as well as possible diagnosis and treatments becomes the next challenge.
Q: In the 10 years that you have been working in this field, how have things changed?
A: I have found positive growth in the legitimization of these conditions. This growth, fueled by an increase in research and greater public engagement, has helped to bring more awareness to the FGIMDs. With the dialogue opening up, it has made the need for additional research and education more apparent and allows the field to grow. This positive change brings certain challenges in where to focus attention first in an area that for so long was underserved
Q: You previously served as Executive Director of the Rome Foundation, an organization for medical professionals committed to improving FGIMD diagnosis and treatment. What was your favorite thing about working with doctors and other health professionals in this field?
A: I have been truly blessed to work with many wonderful people in this field through the Rome Foundation. The best part of working with them is the fact that they are truly ambassadors for this field with a genuine desire to help patients. Not only the Board of Directors, but the other experts in the field worldwide that I had the pleasure of working with are amazing physicians and advocates for the patient.
For the past five years, in addition to the Executive Director role, I had the opportunity to serve as Managing Editor for the Rome IV project, a vast educational resource for physicians on the FGIMDs consisting of seven printed books and online content. Over 120 experts worked with me on this project and reminded me of the hope for the future as these dedicated individuals work to further their research and also educate others.
Q: How do you think working with patients will be different?
A: Working with physicians has afforded me the opportunity to learn much about these disorders and create strong relationships with academics and researchers in the field as well as with industry. Working with patients will be quite different, but I hope that I will able to use the knowledge I have gained to help create a more positive future for us all.
Q: What drew you to IFFGD?
A: The Rome Foundation and IFFGD work together on many things. I have been blessed to be able to participate in National Advocacy Days as well as attend the IFFGD medical conferences in previous years. Through this I had the pleasure of meeting and working with Nancy and Bill Norton. They have always been an inspiration to me and I enjoyed any opportunity I had to work with patients like myself.
With the completion of the Rome IV project in 2017, I felt this was the perfect time to focus my attention more on how to meet the needs of the patient. With two daughters with FGIMDs, I hope that the work I do will help make their path easier to navigate.