With the aim of better integrating and identifying areas of research emphasis, the Network RAB is a mix of CCHS experts and family members with science and medical backgrounds. The RAB meets several times a year (virtually) to discuss and assess CCHS research.
After a competitive research search, two research grants were awarded in 2016.
Dr. Yang received his undergraduate degree from Johns Hopkins University and his MD/PhD degrees from the University of Miami School of Medicine. He performed his internal medicine internship at Mount Sinai Medical Center in Miami Beach, FL and received his radiation oncology residency training at Vanderbilt University Medical Center in Nashville, TN. Currently, Dr. Yang is an Associate Professor and the inaugural holder of the ROAR Southeast Cancer Foundation Endowed Chair in the Department of Radiation Oncology at the University of Alabama, Birmingham. There, he directs his laboratory translational cancer research efforts towards personalized medicine and has been awarded multiple grants from various funding organizations. He also is the Director of the UAB Nanostring Laboratory. Dr. Yang’s daughter was diagnosed at birth with CCHS. In addition to chairing the Research Advisory Board, Dr. Yang also serves on the CCHS Network Board.
Dr. Chen received her undergraduate degree from Northwestern University and her MD from the Northwestern University Feinberg School of Medicine. She performed her pediatrics residency at Rush Children’s Hospital in Chicago, IL and pediatric pulmonology fellowship at the Children’s Hospital Los Angeles (CHLA) in Los Angeles, CA. At these institutions, she also received training in CCHS by world renowned experts Drs. Debra Weese-Mayer and Tom Keens. Currently, she is an Assistant Professor in the Department of Pediatrics in the Division of Pulmonary/Sleep Medicine at the University of Washington School of Medicine. There, she is the Medical Director of the Pediatrics Sleep Disorders Center at Seattle’s Children’s Hospital and has been named one of Seattle’s Top Doctors by Seattle Magazine as well as one of the Top Doctors in 2012 by the US World and News Report. Dr. Chen’s medical practice is the only CCHS service in the state of Washington and has a patient catchment including the Northwest region of the US.
Dr. Dole received her undergraduate degree from the University of Delhi in India, her Masters in Biotechnology from the M.S. University in Baroda, India, and her PhD from the Jawaharlal Nehru University in New Delhi, India. She subsequently was a post-doctoral scientist at the University of Cologne in Germany, a research fellow at Harvard Medical School, and post-doctoral fellow at MIT. She also served as Senior Scientist in the Molecular Diagnostics Department at the Charles River Laboratories. Dr. Dole has a wealth of expertise in molecular biology, vaccine development, mouse models of human disease, and molecular diagnostics. Dr. Dole’s nephew was diagnosed at birth with CCHS.
Ms. Kun received her undergraduate degree from California State University and her Masters in Health Care Administration also from California State University. Currently, she is a certified pediatric nurse and has served as Nurse Care Manager of Pediatric Pulmonology at the Children’s Hospital Los Angeles since 1996. Ms. Kun works closely with Dr. Tom Keens at CHLA and has been involved in numerous studies of home mechanical ventilation for children with tracheostomies, including home care practices, quality of life, and other aspects important for patients with CCHS. She has also served as the Editor and Producer of an educational book and DVD on the subject of CCHS and Diaphragm Pacing. Ms. Kun has been a long-time advocate for and supporter of the CCHS Community.
Dr. Adam Roise received his undergraduate degree from Concordia College in Moorhead, MN, and his MD from the University of North Carolina School of Medicine. At UNC, he also received his Masters in Public Health with a certificate in Global Health. Dr. Roise completed his Family Medicine residency at the Northeast Iowa Family Residency Program in Waterloo, IA, where he was named the resident of the year and clinical resident teacher of the year. Currently he serves as an Assistant Program Director and Medical Director for the Northeast Iowa Family Medicine Residency Program and adjunct Clinical Assistant Professor in the Department of Family Medicine at the University of Iowa Carver College of Medicine. Dr. Roise’s son was diagnosed at birth with CCHS.
Dr. Ha Trang is an Associate Professor of Physiology and head of the Pediatric Sleep Center of the Robert Debré hospital. She has been involved in management of CCHS patients since 1995. Patients come from all areas of France and abroad for her CCHS expertise. Dr. Trang serves as the coordinator of the French National Centre of Reference for CCHS since 2004 (National Plan for Rare Diseases) and is one of the founders and actual coordinator of the European CCHS consortium (since 2005). She is a core member of the French CCHS group which has contributed key advances in knowledge in CCHS including the identification of PHOX2B as the CCHS-causing gene, description of CCHS cardiac and digestive phenotypes, phenotype/genotype correlations, and implementation and coordination of a French CCHS registry.
Dr. Vanderlaan, who received her PhD in Political Science in 1979 from Michigan State University, is a world-recognized advocate for CCHS patients and research. She established the CCHS Family Network in 1989, a year after her son was born with CCHS. The Network, which celebrated its 25th Anniversary in 2014, has a multifaceted mission of research, family/patient support, and education outreach across CCHS families/groups around the world. Dr. Vanderlaan’s own research has advanced knowledge of CCHS; she has also worked with CCHS researchers such as Tom Keens, David Gozal and Ron Harper. Network advocacy and facilitation of patient participation supported research that ultimately identified the genetic determinant of CCHS, PHOX2b, by each of three teams, in France (Ha Trang et al), in the US (Weese-Mayer et al), and in Italy (Ceccherini et al). Dr. Vanderlaan continues as Executive Director of the CCHS Family Network. She is Professor of International and Comparative Politics at Hartwick College in Oneonta, New York. Dr. Vanderlaan’s son was diagnosed at birth with CCHS.