Adult Considerations in Spinal Muscular Atrophy: Building Clinician and Patient Medical Teams

Dr. Chiriboga is Professor of Neurology and Pediatrics at Columbia University Irving Medical Center (CUIMC) and former Interim Director of the Division of Child Neurology, Departments of Neurology and Pediatrics, Vagelos College of Physicians and Surgeons. She is also former Chief of Pediatric Neurology at Columbia University’s affiliate hospital, Harlem Hospital Center.

Dr. Chiriboga was born in Peru and educated in Argentina, where she graduated with Honors from the Faculty of Medicine at the National University of Buenos Aires in 1982. Dr. Chiriboga completed training in pediatrics at St. Luke’s-Roosevelt Hospital in 1985. After completing her training in child neurology in 1988 at the Neurological Institute and Babies’ Hospital of Columbia-Presbyterian Medical Center, Dr. Chiriboga joined the Division of Child Neurology at NewYork-Presbyterian/Columbia University Irving Medical Center. Subsequently, she completed a Neuroepidemiology fellowship at the Gertrude H. Sergievsky Center and received a master’s in public health from the Mailman School of Public Health, Columbia University. Dr. Chiriboga serves/has served on committees of the NIH, CNS, and the American Board of Psychiatry and Neurology (ABPN). She is a diplomate of the ABPN in Child Neurology.

Dr. Chiriboga’s current research focuses on Spinal Muscular Atrophy (SMA) clinical trials. Past areas of research, including NIH funding, have focused on congenital infections and neurodevelopmental disorders, including cerebral palsy and effects of perinatal exposures. Her clinical practice focuses on neuromuscular disorders as well as developmental, neurobehavioral neurology, and migraine, and on the treatment of spasticity.

Vanessa Battista, DNP, MBA, MS, RN, CPNP-PC, CHPPN, FPCN is a board-certified Pediatric Nurse Practitioner (PNP) and currently serves as Senior Nurse Director of Palliative Care at the Dana Farber Cancer Institute. Previously, she practiced as a PNP on the Pediatric Advanced Care Team (PACT) at the Children’s Hospital of Philadelphia (CHOP). She also served at the neuromuscular centers at CHOP, the Columbia University Medical Center, and the Children’s Hospital of Boston. Dr. Battista was clinical faculty at the Boston College Connell School of Nursing where she developed the Pediatric Palliative Care Masters subspecialty program.

Dr. Battista also serves as a board member and consultant for various organizations that provide services for patients and families living with life-threatening diseases. She lectures and teaches at the local, national, and international level, and is a member of the End-of-Life Nursing Education Consortium (ELNEC) pediatric faculty. Dr. Battista is an active reviewer for publications and grants, and has authored several book chapters and articles on various aspects of pediatric palliative care and neuromuscular disease.

Dr. Battista was a Jonas Nursing Scholar, and the recipient of the ELNEC Award for Excellence, the Distinguished Young Alumni Award from Columbia University, and the DNP Leadership Award from Johns Hopkins University. She also earned Clinical Master status among advanced practice providers at CHOP. She earned her bachelor’s degree from Boston College in psychology, with minors in health sciences and faith, peace, and justice studies; her nursing degree and master’s degree from Columbia University School of Nursing; and completed a certificate in Pastoral Ministry at the Boston College School of Theology and Ministry. Dr. Battista obtained her Master of Business Administration and Doctor of Nursing Practice from Johns Hopkins University.

Dr. Duong is the director of clinical outcomes research and development at Stanford University Neuromuscular division. Clinically, she is a physical therapist with 20 years of clinical experience in evaluating, treating, and validating clinical outcomes for patients with neuromuscular disease. She is involved in ongoing studies and developments on initiatives in treatments for neuromuscular disease, novel trial designs, and outcomes development. Prior to her arrival at Stanford University in 2015, she directed clinical evaluations and training for an international network, Cooperative International Neuromuscular Research Group (CINRG), in Washington, DC.

Her clinical and research interests in developing, refining, and understanding outcome measures in neuromuscular disease contributes to her determination in improving efficacy endpoints for clinical trials as well as interpreting these endpoints on the changing phenotype in neuromuscular diseases. Her area of research focuses on the impact of exercise and physical activity on disease physiology and quality of life. She hopes to integrate technology and digital biomarkers as a complementary tool to performance-based measures used in trials, in the clinic, and remotely.

She enjoys working on multi-disciplinary teams, mentorship, and creating patient-focused solutions to improve the quality of life for all neuromuscular patients. Her interests and hobbies include hiking, running, gardening, and working with technology and design products to make the world more accessible for individuals with different abilities.