Child Neurology Foundation: Infantile Spasms Awareness Week Scheduled For December 1-7

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Child Neurology Foundation (CNF); Infantile Spasms Action Network (ISAN)

Nov 30, 2017, 09:07 ET

MINNEAPOLIS, Nov. 30, 2017 /PRNewswire-USNewswire/ -- From December 1 to 7, 2017, a coalition of organizations known as the Infantile Spasms Action Network (ISAN) will mark Infantile Spasms Awareness Week (ISAW). 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.

Infantile spasms (IS) affect newborns before the age of one and in some children, occurring up to age two. IS impact more than 1,200 infants per year in the United States. While rare, these seizures can cause long-term damage to a child's developing brain. Infantile spasms are characterized by repetitive, but often subtle movements—such as a jerking of the mid-section, raising of arms similar to a startle reflex, head bobs, or wide-eyed blinks. IS can happen in clusters, dozens at a time, and in some cases, leading to hundreds of seizures per day if left untreated. IS can result in increased risks for developmental delay, lifelong intractable epilepsy, autism, and even death. Fortunately, treatments are available to help control the spasms. Prompt identification and treatment of IS are critical, but IS often have a subtle appearance, so they can be difficult for parents to recognize as a serious problem.

"Most pediatricians will see only one or two IS cases during their careers. Couple that with the potential for severe developmental delay in infants left untreated, and the need for providers, caregivers, and the public to be aware of the urgency of IS, diagnosis and treatment become critical priorities in the child neurology community," stated Amy Brin Miller, Executive Director of the Child Neurology Foundation, the organization that convenes ISAN.

ISAW 2017 hosts a variety of events and initiatives including social media campaigns for both parents and the general public, national and local media interviews, physician awareness projects, and activities at the American Epilepsy Society annual meeting in Washington, DC.

Members of the Infantile Spasms Action Network include: American Academy of Neurology, American Academy of Pediatrics, American College of Emergency Physicians, American Epilepsy Society, Association of Child Neurology Nurses, Bcureful. Belgium TSC, The Brain Recovery Project: Childhood Epilepsy Surgery Foundation, 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.

To join the ISAW 2017 campaign, use #ISAW2017 and visit www.isweek.org.

ISAW 2017 is supported by charitable contributions and educational grants from Greenwich Biosciences, Lundbeck, Mallinckrodt and Upsher-Smith.

SOURCE Child Neurology Foundation (CNF); Infantile Spasms Action Network (ISAN)