We are proud members of the Infantile Spasms Action Network (ISAN), a collaborative network of over 25 national and international entities dedicated to raising awareness about infantile spasms – a catastrophic form of epilepsy if not stopped early. As active members of ISAN, we meet twice year with other ISAN members which include the American Academy of Neurology, American Academy of Pediatrics, American College of Emergency Physicians, American Epilepsy Society, Association of Child Neurology Nurses, Bcureful. Belgium TSC, Child Neurology Foundation, Child Neurology Society, CURE Epilepsy, Danny Did Foundation, Dup15q Alliance, Epilepsy Foundation of America, Global Genes, Greenwich Biosciences, Lennox Gastaut Syndrome Foundation, Mallinckrodt Pharmaceuticals, Mickie’s Miracles, National Organization for Rare Disorders, RARE Science, SeizureTracker.com, Tuberous Sclerosis Alliance, and Upsher-Smith Laboratories.
As part of our work with ISAN we are actively engaged in Infantile Spasms Awareness Week (ISAW) December 1 – 7 of each year. The goal of ISAW is to increase awareness and understanding of infantile spasms through the distribution of objective educational materials to providers, caregivers, and the public; the announcement of new and useful research and support initiatives; the recognition of exemplary contributions to care; and the declaration to patients and caregivers that help is available and hope exists. As part ISAW in 2017, we attended a congressional briefing on infantile spasms convened by the Child Neurology Foundation. In 2018, with grant money from the Child Neurology Foundation, we produced this video on behalf of ISAN which has been viewed over 400,000 times on Facebook. Because of its effective and direct messaging, ISAN once again decided to use our video for its ISAW 2019 awareness campaign.