2025 KAND Conference

Wendy Chung, MD, PhD is a clinical and molecular geneticist and the Chief of the Department of Pediatrics at Boston Children’s Hospital and Harvard Medical School. Dr. Chung has been a champion for KAND since KIF1A.ORG’s founding, and has driven key projects including the Natural History Study and the development of ASO therapies.

Mary Whitman, MD, PhD is an Assistant Professor of Ophthalmology at Boston Children’s Hospital and Harvard Medical School specializing in pediatric ophthalmology and strabismus.  She is one of the few practicing pediatric ophthalmologists who also runs a basic science laboratory; in her lab she studies development of the oculomotor system and genetics of eye movement disorders. She has a special interest in disorders related to kinesins and tubulins and has been performing eye exams as part of the KOALA study of KIF1A related disorder.

Dr. Ebrahimi-Fakhari is a Neurologist and Neuroscientist at Boston Children’s Hospital and Harvard Medical School. He serves as the Director of the Movement Disorders Program and the Pediatric Movement Disorders and Neurogenetics Fellowship at Boston Children’s Hospital. As a physician-scientist dedicated to patient-centered translational research, his goal is to facilitate clinical trial readiness and to develop molecular therapies for genetic movement disorders. Work from this research program has been published in over 130 peer-reviewed publications. His team is supporting the KOALA study and cares for an increasing number of children and young adults with KIF1A-related disorder.

Lottie Morison is a speech pathologist and PhD candidate at the Murdoch Children’s Research Institute in the CRE Translational Centre for Speech Disorders, and The University of Melbourne. Lottie’s research focuses on speech and language in rare genetic conditions, including KIF1A-associated neurological disorder. Lottie’s work aims to improve communication outcomes and quality of life for individuals with KAND and their families. In 2025 Lottie published the first KAND-specific communication study with participation from over 40 families across the world.

Parag Gad, PhD, is a co-founder of SpineX, a biotechnology company developing non-invasive neuromodulation to improve movement outcomes in people with spinal cord injury and diseases like cerebral palsy. SpineX’s Spinal Cord Innovation in Pediatrics (SCiP) device recently received Breakthrough Device designation from the FDA.

Jennifer Bain, MD, PhD, is an Associate Professor of Neurology and Pediatrics at the Columbia University Medical Center. She currently works as a physician scientist at Columbia University specializing in general pediatric neurology with expertise in development, behavioral neurology, autism and cerebral palsy. Dr. Bain has been a longtime advocate for KAND research and treatment, and is currently administering the first to ASO treatments for Susannah Rosen and Sloane Hedstrom.

Dr. Simran Kaur is an early career researcher and team leader at MCRI and University of Melbourne. Along with her team, Dr. Kaur is leading Australia’s first KIF1A-Associated Neurological Disorder research program in collaboration with national and international collaborators including KIF1A.ORG and KIF1A.AU to accelerate research into the condition. Her group is advancing several key areas, including a compound screen of FDA-approved molecules, development of a KIF1A mini-gene, and incorporating life experiences of KAND families into the scientific literature.

Dr. Laurence Mignon is the executive director of clinical development at n-Lorem Foundation. Laurence has more than 20 years of experience as a seasoned academic researcher and clinical developer with a passion for rare diseases. In her role, Laurence guided n-Lorem’s efforts to create safe RNA-based therapies for nano-rare patients, including several individuals with KIF1A mutations.

Markus Terrey, PhD, is a Study Director in the Rare Disease Translational Center at JAX, where he researches neurodevelopmental and neurodegenerative disorders. The Lutz lab genetically engineers mice to model rare diseases, and has gone above and beyond in developing a suite of tools for KAND research, including mouse models and cell lines available for the KIF1A Research Network.

Jayne Aiken, PhD, comes from an interdisciplinary background spanning engineering, cell biology, and neuroscience. As a postdoc at the University of Pennsylvania, Jayne has studied how different KIF1A mutations impact the protein’s function, providing key insights into KAND heterogeneity. She was also a key consultant in the selection of KIF1A variants represented in genetically engineered iPSC lines designed by Jackson Laboratory.