The 2020 Cholangiocarcinoma Foundation (CCF) Annual Conference was held virtually this year, as did all oncology conferences, because of the COVID-19 pandemic. More than 1400 people, including patients, caregivers, clinicians, researchers, and industry experts from 49 states and 42 countries, participated in the conference. This year, CCF invited patients and caregivers to share their experiences and concerns with fellow conference attendees.
CCF was founded in 2006 by Stacie C. Lindsey. In addition to being a founding member and Chief Executive Officer of CCF, Ms Lindsey has served on its Board of Directors since the foundation’s inception.
After receiving the devastating news that her brother, Mark Clements, had been diagnosed with cholangiocarcinoma (CCA), a diagnosis that was described as inoperable and uncurable cancer, Ms Lindsey set on a 15-month learning journey that took her to a strange and unimaginable place to a lay person. Mr Clements was only 40 when he died after a 15-month-long battle with CCA.
What is this rare disease, CCA, that strikes between 8000 and 10,000 people in the United States each year? Why did it target someone so young? Is cancer not a disease of older people? And why do most patients with CCA not survive this terrible disease?
When Mark was diagnosed in 2005, there was not a lot of information for patients with CCA and their caregivers. Almost all the knowledge regarding CCA was available only on medical websites. With a myriad of online resources, it was an arduous task to follow and filter all the articles and opinions from experts to try and find the right information that could potentially help her brother.
With this daunting challenge in front of her, Ms Lindsey understood that she had few resources to call on for guidance. Realizing that she would need help, she embarked on a campaign that involved contacting and networking with other patients, researchers, and healthcare professionals who were experts in the management of CCA. In time, her vast connections grew to include key experts in the diagnosis and management of CCA.
During this year’s conference, some of those key experts, such as Rachna T. Shroff, MD, MS, University of Arizona Cancer Center, Tucson; Jesús M. Banales, PhD, Biodonostia Institute, San Sebastián, Spain; Juan Valle, MB ChB, MSc, FRCP, the Christie NHS Foundation Trust, England; Lipika Goyal, MD, Massachusetts General Hospital, Boston; Eileen O’Reilly, MD, Memorial Sloan Kettering Cancer Center, New York City; Mitesh J. Borad, MD, Mayo Clinic Cancer Center, Scottsdale, AZ; John Bridgewater, MD, PhD, MRCP, University College London Hospital, England; and others shared key data and perspectives with the audience.
For example, Geret Giles, PhD, MS, Founder and Practice Owner, Giles & Associates Family Psychology, Pleasant Grove, UT, and Susan Ash-Lee, MSW, LCSW, Vice President, Clinical Services, Cancer Support Community, discussed ways in which they help patients with cancer and their caregivers manage stress and depression that are often associated with a cancer diagnosis.
In addition, Ms Lindsey and her team assembled many patients, caregivers, volunteers, and patient advocates from across the globe who shared their experiences and personal stories, and explained how they are continuously committing themselves to Ms Lindsey’s vision, the foundation’s mission, and the patients they serve.
Although Mr Clement’s life was cut short by this deadly cancer, his legacy is the work that his sister carries on to this day. The CCF’s mission is to find a cure for CCA—by working closely with pharmaceutical companies and cancer researchers in the search for new treatments—and to improve the quality of life of patients who are diagnosed with CCA.
Their efforts have led people from all walks of life to come together to help one another and to work together with the goal of finding a cure for CCA, so that another family does not have to hear the news that Ms Lindsey and her family did in 2005.
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