CCHS Research Advisory Board (RAB)

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, two in 2017, and two in 2018. For more information on these projects go to the Funded Research Projects page.

Eddy Yang, Chair


Jason Burbach


Maida Chen


Linda Dokas



Ajay Kasi



Sheila Kun




Chair: Eddy Yang, MD, PhD

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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.


Jason Burbach, MS

Mr. Burbach received his undergraduate Bachelors of Science from The University of Minnesota – Twin Cities and his Masters of Science from the University of Colorado – Boulder both in Aerospace Engineering.  His academic forte is in statistical orbit determination and interplanetary navigation.  Early in his career he designed, built and tested guided missile systems before focusing on interplanetary space exploration.  Previously he was the lead ground software/simulation engineer for over half a dozen separate NASA missions to the Moon, Mars, Jupiter, and the asteroid Bennu.  Currently he is the Lead Software Architect and Designer for a team of spacecraft engineers that oversees a constellation of earth imaging satellites. Jason’s son was diagnosed at birth with CCHS. Jason joins the CCHS Network Research Advisory Board as an industry research associate and statistical data scientist. He has an interest in advancing respiratory technology in CCHS.


Maida Chen, MD

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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.


Linda Dokas, PhD

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Dr. Dokas received her undergraduate degree from Western Illinois University and her Ph.D. degree from the University of Michigan, both in Biological Sciences. Following postdoctoral training in Neuroscience with Dr. Bernard Agranoff at the University of Michigan, she became a faculty member at the Medical College of Ohio in the Departments of Neurology and Biochemistry. More recently, she was an Adjunct Research Scientist in the Molecular and Behavioral Neuroscience Institute at the University of Michigan. Her research interests concern regulation of neuronal signaling pathways, primarily in cellular models of stress and brain disorders. Over her career, Dr. Dokas was the recipient of multiple research grants from the National Institutes of Health and the Alzheimer’s Association. She has extensive experience in peer review for research journals and grant funding agencies, including as a member or chair of study sections and site visits for the National Institutes of Health. Dr. Dokas is the grandmother of a child with CCHS.


Ajay Kasi, MD

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Dr. Ajay Kasi is a pediatric pulmonologist at Children’s Healthcare of Atlanta and Assistant Professor at Emory University School of Medicine. He graduated from Bangalore Medical College in India, completed pediatric residency at Miami Children’s Hospital in Florida, and fellowship in pediatric pulmonology from Children’s Hospital Los Angeles (CHLA). Dr. Kasi trained under Dr. Thomas Keens and Dr. Iris Perez at CHLA where he developed a passion for CCHS. Since joining Children’s Healthcare of Atlanta in 2017, he has established a CCHS and diaphragm pacing program which is the only comprehensive program serving children with CCHS in the US southeast.


Sheila Kun, RN, BSN, MS

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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.