NRI conference accelerates next phase of research on catastrophic epilepsy
Rajalaxmi Natarajan, PhD
Dr. John Swann, co-director of the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children’s Hospital and Baylor College of Medicine, co-authored an article in Science Translational Medicine that highlights key research findings presented earlier this year at the NRI conference on catastrophic childhood epilepsy.
Patients with catastrophic epilepsy battle debilitating seizures –sometimes dozens or even hundreds a day – and are susceptible to long-term cognitive and behavioral disabilities such as autism. Often times, anticonvulsant medications do little to reduce or eliminate frequent seizures in these patients.
More than 300 attendees shared their perspectives and insights at the two-day NRI summit, “When Epilepsy is Catastrophic: Molecular Causes and their Consequences,” including physicians, academic and pharmaceutical researchers, families and patient advocates, and representatives from the National Institutes of Health, private foundations and the Food and Drug Administration.
Participants assessed the current state of knowledge about catastrophic epilepsies, proposed avenues for advancing the basic science and the development of new therapies, and identified barriers – scientific, methodological and cultural – that may be hindering advances in the field. Especially crucial for guiding the direction of these deliberations and discussions were contributions from the parents of children with these disorders.
The meeting produced a series of recommendations designed to accelerate the next phase of research on catastrophic epilepsies.