BLOOMINGTON, Minn., Oct. 12 /PRNewswire/ -- The Child Neurology Foundation (CNF) today announced the launch of a new educational website centered on infantile spasms (IS). The website, www.infantilespasmsinfo.org, is an educational resource developed by the CNF as one of the key components of Infantile Spasms Awareness Week.
Earlier this year, the CNF announced that the first annual IS Awareness Week will place this week in conjunction with the Child Neurology Society (CNS) Annual Meeting in Louisville, Kentucky, October 14-17, 2009. The goal of IS Awareness Week is to provide pediatricians, child neurologists, parents and caregivers with objective educational tools which will increase awareness and understanding of infantile spasms. It is widely recognized that early and aggressive treatment of IS can impact the prognosis of infants diagnosed with IS.
In addition to the launch of www.infantilespasmsinfo.org, the CNF is making available a new educational brochure and DVD intended to help parents, caregivers and physicians to better understand IS. The brochure includes an overview of IS, the challenges of diagnosis and a discussion of available treatment options; the DVD emphasizes the emotional impact of IS. The DVD includes stories of real IS patients and commentary from some of the nation's leading experts in the treatment of IS. All of these valuable resources help to paint the picture of a rare disease whose prognosis can be impacted when diagnosed and treated early and aggressively.
"We are very excited about all of the important activities surrounding IS Awareness Week," said John Stone, executive director of the Child Neurology Foundation. "Furthermore, we believe that our new website, brochure and DVD will serve as important, objective educational resources that will last well beyond the duration of IS Awareness Week."
"Due to the rare nature of infantile spasms, physicians have not had ready access to unbiased educational materials for parents and caregivers of infants with IS," said Lawrence Brown, M.D., Associate Professor of Neurology and Pediatrics at Children's Hospital of Philadelphia. "This is an important step that we are taking this week to shed light on a condition that needs to be better understood by the child neurology community, pediatricians and caregivers."
Funding for Infantile Spasms Awareness Week and the educational materials created by CNF was provided by Questcor Pharmaceuticals via an unrestricted educational grant. Questcor did not have any involvement regarding the content of the information in the brochure, DVD or the website.
About Infantile Spasms
Infantile spasms (a.k.a. West Syndrome) is a severe, ultra-rare form of epilepsy that typically begins in infancy. It is estimated that there are fewer than 2,000 new cases of IS in the United States each year, giving IS orphan disease designation. Infantile spasms typically occur in the first year of life, often beginning between three to six months of age. Infantile spasms is characterized by head drops with associated outstretched arms. (These spasms have also been described as nodding, salaam seizures, and jackknife seizures.) Often, in the beginning, the attacks are brief, infrequent and not typical, so it is quite common for the diagnosis to be delayed. Frequently, due to the pattern of the attacks and the cry that a child gives during or after an attack, the attacks are initially thought to be due to colic or gastric distress.
About the Child Neurology Foundation
Founded in October 2000, the Child Neurology Foundation was created as the outreach and philanthropic arm of the Child Neurology Society. Members of the CNS include more than 1,300 child neurologists from the United States, Canada, as well as more than 30 other countries around the world.
The Foundation's mission is to advocate for children and adolescents with neurologic and developmental disorders; fund neurologic research of young investigators; promote awareness of career opportunities in child neurology; provide public, professional, and patient education programs; and support the activities and mission of the CNS.
For more information on the CNF, please visit www.childneurologyfoundation.org.
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SOURCE Child Neurology Foundation
|SOURCE Child Neurology Foundation|
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