MD, Cleveland Clinic Sanford R. Weiss, MD Center for Hereditary Colorectal Neoplasia
James Church is a native New Zealander who attended medical school at the University of Auckland. His surgical training was also in Auckland, New Zealand. Following this he spent 2 years doing research before taking up a colorectal surgical fellowship at the Cleveland Clinic in Cleveland Ohio. In 1989 he joined the Staff of the Colorectal department in Cleveland. Dr. Church’s interests include hereditary colorectal cancer syndromes, colonoscopy and polypectomy, the clinical care and molecular biology of colon and rectal cancer, anal fistulas, fecal incontinence and inflammatory bowel disease. He is the Director of the Sanford R. Weiss Center for Hereditary Colorectal Neoplasia, holds the Victor W. Fazio Chair of Colorectal Surgery and is the sole author of 2 textbooks, over 50 chapters and over 295 peer reviewed articles, and for 10 years was co-editor of Diseases of the Colon and Rectum. He is regularly listed among the top doctors in America, is a fellow of the American Surgical Society and became a Distinguished Alumnus of the University of Auckland in 2008.
Robin Beth Dubin
MBA, Executive Director and Co-founder, AliveAndKickn
Dakota Fisher Vance
FAPulous TV and Young People Cancer Connection
Dakota Fisher Vance graduated from Bryn Mawr College in 2011 with a degree in biology, a fantastic job lined up, and a perceived relatively healthy body (with the exception of her very active chocolate addiction). Two months later after a severe bout of anemia warranting a trip to the ER and an emergency colonoscopy, she was diagnosed at the age of 22 with the rare genetic disease, Familial Adenomatous Polyposis (F.A.P.). F.A.P. increases the lifetime risk of several cancers one of which, colon cancer, she was already in the early stages of developing. Reluctantly, she traded in her post-college job for surgical gowns at the end of 2011 to have her cancerous colon removed. While working abroad in mid-2013, she encountered another trick up F.A.P.’s sleeve and was diagnosed with a desmoid tumor, an even rarer soft tissue sarcoma, which she currently manages with an oral chemo. If anything, this tumor confirmed that while she hoped to be one in a million, statistically speaking, she’s closer to four in a million! Appalled by the lack of information available on her disease, Dakota created the first F.A.P. geared YouTube channel (FAPulousTV) where she shares the experience and research she’s accumulated with F.A.P. and serves as an ambassador for the Hereditary Colon Cancer Foundation in an attempt to enable her diseased peers to better advocate for their own healthcare. She hopes to continue working in the patient advocacy and education sector while occasionally putting some literal distance between her and her diagnoses by expanding upon the list of places traversed by her colonless body (which currently includes Croatia, Bosnia, Israel, Indonesia, Thailand, Singapore, Japan, South Korea, France, and Spain)!
MD, University of Iowa Carver College of Medicine
James Howe is a Surgical Oncologist and Endocrine Surgeon who specializes in taking care of patients with cancers of the pancreas, liver, GI tract, soft tissue sarcoma, melanoma, thyroid, parathyroid, and adrenal glands; James is co-director of the Neuroendocrine Cancer clinic, Division Director of Surgical Oncology and Endocrine Surgery, and Professor of Surgery at the University of Iowa. His area of research expertise is in familial cancer syndromes, genetic linkage, gene discovery, and gene expression studies. James’ postdoctoral training at Washington University, under Helen Donis-Keller, Ph.D. and Samuel Wells, M.D., was directed at the identification of the gene for Multiple Endocrine Neoplasia Type 2. As a faculty member, his first interest was in the genetics of Juvenile Polyposis, which led to the discovery of the two known predisposing genes. Over the past decade, James has developed a large clinical practice and research interest in gastroenterohepatic neuroendocrine tumors (NETs). The focus of his research includes genetic studies in pancreatic and small bowel neuroendocrine tumors, with emphasis on gene expression profiles, predisposing genes, as well as identification of new targets for diagnosis and therapy.
JPS Patient Speaker, Senior Graphic Designer, The Toro Company
MD, Comprehensive Cancer Risk and Prevention Clinic, University of Chicago Medical
Gastroenterologist Sonia Kupfer, MD, is a skilled specialist in all types of digestive system disorders. As a physician in the Comprehensive Cancer Risk and Prevention Clinic and the Celiac Center, she is particularly focused on diagnosing and treating patients with genetic disorders such as hereditary gastrointestinal cancer syndromes and celiac disease.
Dr. Kupfer is interested in racial and gender disparities in patients with colorectal cancer. Currently, the National Institutes of Health/National Cancer Institute is funding her five-year study of genetic associations in African-American colorectal cancer patients. Additionally, she recently co-authored a book chapter on colorectal cancer genetics for Early Detection and Prevention of Colorectal Cancer.
Joy Larsen Haidle
MS, CGC, NSGC (Cancer Expert) and Humphrey Cancer Center
Joy Larsen Haidle, MS, CGC, is immediate past president of the National Society of Genetic Counselors. As NSGC’s Cancer Expert, Larsen Haidle can discuss hereditary cancer syndromes such as Lynch syndrome and hereditary breast cancer, and is an active public policy advocate for genetic testing. She is experienced in helping patients with a higher risk of genetic diseases understand genetic testing results, navigate through treatment options, and educate family members about their potential risk of disease.
An author of several genetic counseling practice guidelines, including colorectal cancer joint practice guidelines and cancer counseling, Larsen Haidle is a proven cancer genetic counseling leader. She also has an impressive array of published articles on topics such as Lynch syndrome, a disease that increases one’s risk for cancers, particularly of the colon and rectum; and juvenile polyposis, a disorder characterized by polyps in the gastrointestinal tract.
In addition to her role with NSGC, Larsen Haidle is a genetic counselor at Humphrey Cancer Center in Robbinsdale, Minn. She is a member of the American Society of Human Genetics, the Minnesota Genetic Counselors Association and the Collaborative Group of the Americas on Inherited Colorectal Cancers.
Larsen Haidle attended Buena Vista College and earned a master’s degree in Human Genetics from Sarah Lawrence College. She is certified by the American Board of Genetic Counseling, and is a 2012 recipient of NSGC’s leadership award for most outstanding volunteer.
MS, CGC, Cleveland Clinic Sanford R. Weiss, MD Center for Hereditary Colorectal Neoplasia
Brandie Heald Leach, MS, is a certified genetic counselor at the Cleveland Clinic. She has been practicing there since 2006 upon graduating from the University of Cincinnati Graduate Program in Genetic Counseling. Ms. Leach counsels patients with or at risk for hereditary cancer syndromes, especially hereditary colon cancer conditions. In 2007 she established genetic counseling services within the Digestive Disease Institute at the Cleveland Clinic. She also coordinates the Cleveland Clinic institution-wide MSI testing program, and conducts research on the hamartomatous polyposis syndromes and Barrett's esophagus. She has served in various leadership positions within the National Society of Genetic Counselors and is on the Collaborative Group of the Americas on Inherited Colorectal Cancer Council. Ms. Leach is a member of the Cleveland Clinic Commission on Cancer Committee.
Thomas P. Plesec
MD, Cleveland Clinic Sanford R. Weiss, MD Center for Hereditary Colorectal Neoplasia
After graduating from Northeastern Ohio Universities College of Medicine in 2004, Thomas P. Plesec, MD completed an anatomic and clinical pathology residency at Cleveland Clinic as well as fellowship in gastrointestinal, hepatic, and pancreatobiliary pathology, also at Cleveland Clinic and under the guidance of Dr. Mary P. Bronner. Since 2009, Dr. Plesec has served as a board certified staff gastrointestinal pathologist at Cleveland Clinic with a particular interest in molecular gastrointestinal pathology. Dr. Plesec leads the pathology-based efforts in screening for Lynch syndrome and maintains a close working relationship with genetic counselors, gastroenterologists, and colorectal surgeons that care for patients with hereditary gastrointestinal cancer syndromes. Dr. Plesec has co-authored numerous publications on gastrointestinal malignancies and has lectured on the subject at the local, regional, and national levels.
MD - Mayo Clinic, FL
Douglas Riegert-Johnson lives in Ponte Vedra Beach Florida and works at Mayo Clinic Florida in Jacksonville. He is an associate professor of medicine and genetics. His family is originally from the Birmingham area of Alabama and he attended the University of Alabama School of Medicine. Dr. Riegert-Johnson then completed a residency and chief residency in medicine and fellowship in gastroenterology at Mayo Clinic Rochester. He also completed a residency in medical genetics at Johns Hopkins. His mentor is Dr. Lisa Boardman at Mayo Clinic Rochester.
For the past 6 years Dr. Riegert-Johnson has been at Mayo Clinic Florida leading a cancer genetics program. He has been very fortunate to work with a group of truly talented physicians, nurses and genetic counselors. The cancer genetics group has been active in researching many cancer syndromes including familial adenomatous polyposis, Peutz-Jeghers syndrome, Lynch syndrome, Muir-Tore syndrome and Cowden syndrome. Notable projects include working with Dr. Lynch to describe the EPCAM mutation from of Lynch syndrome and the largest study of Cowden syndrome at the time it was published.
His current project is to develop an open access web-based platform for education and caring for FAP patients called www.polyppolyp.com. Other completed projects include a cancer genetics ebook for www.pubmed.com called www.cancersyndromes.org.
DO, Children’s Mercy Hospital Kansas City
After graduating medical school from Des Moines University, Seth Septer, DO completed fellowships in pediatric gastroenterology at the University of Nebraska Medical Center and Children’s Mercy Hospital and Clinics.
Since 2011, Seth has served as a board certified pediatric gastroenterologist at Children’s Mercy Hospital and Clinic in Kansas City, MO, and is an assistant professor at the University of Missouri-Kansas City School of Medicine. Seth is one of only a few pediatric gastroenterologists who specialize in hereditary colon cancer syndromes and is the director of the Hereditary Cancer and Polyposis Program at Children’s Mercy Hospital and Clinic. Seth's research interests span a gamut of GI-related topics including Familial Adenomatous Polyposis and its effects on young people.
In his spare time, Seth enjoys spending time with his three daughters and helps to coach the several soccer teams that they play on. He also enjoys cycling and reading.
MD, The Ohio State University Wexner Medical Center
Peter Stanich MD is a gastroenterologist and assistant professor at the Ohio State University Wexner Medical Center in the Division of Gastroenterology, Hepatology and Nutrition. He serves as the director of the GHN Section of Intestinal Neoplasia and Hereditary Polyposis. His clinical focus is on the diagnosis and longitudinal care of patients with hereditary colon cancer syndromes through an expanding multi-disciplinary specialty clinic in conjunction with genetic counselors. His research interests include PTEN hamartoma tumor syndrome and its gastrointestinal manifestations. He completed his internal medicine residency at the Mayo Clinic and his gastroenterology fellowship at Ohio State.