Infantile Spasms Awareness Week Scheduled For December 1-7

Wednesday, November 30, 2016 General News
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WASHINGTON, Nov. 30, 2016 /PRNewswire-USNewswire/ -- From December 1 to 7, 2016, a coalition

of organizations 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) is a rare seizure disorder that occurs in young children, usually under one year of age. The average age of onset is around four months, but some children may experience spasms as early as one month. About 2,500 children in the United States are diagnosed each year with infantile spasms; children who develop IS are at great risk for developmental disability and autism, but some children will do well if treated early and accurately. IS can present as repetitive and rhythmic head bobs, and often coincide with developmental regression.

"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 becomes a critical priority in the child neurology community," stated Amy Brin Miller, Executive Director of the Child Neurology Foundation (CNF).

ISAW 2016 includes social media campaigns directed to the general public and parents, national and local media interviews, physician awareness projects, and activities at the American Epilepsy Society annual meeting in Houston.

2016 ISAW partner organizations include the American Academy of Pediatrics, Association of Child Neurology Nurses, American College of Emergency Physicians, American Epilepsy Society, Child Neurology Foundation, Child Neurology Society, Citizens United for Research in Epilepsy (CURE), Danny Did Foundation, Global Genes, Lennox-Gastaut Syndrome (LGS) Foundation, RARE Science,, and Tuberous Sclerosis Alliance.

In early October, CNF presented Dr. Stephen B. Coker, a neurologist at Central DuPage Hospital, Lurie Children's Northwestern Medicine, in Winfield, IL, with the 2016 Infantile Spasms Heroes Award.  In addition, the Tuberous Sclerosis Alliance recognized Ellen Wehrman of Mount Pleasant, MI with the 2016 Infantile Spasms Hope Award.

To join the ISAW 2016 campaign, use #ISAW2016 and visit

Infantile Spasms Awareness Week is supported by charitable contributions and educational grants from Lundbeck, Mallinckrodt, and Novartis.

CONTACT: Jaye Isham, 301-562-9890,

To view the original version on PR Newswire, visit:

SOURCE Tuberous Sclerosis Alliance

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