BLOOMINGTON, Minn., Oct. 28 The Child Neurology Foundation (CNF) today announced that $30,000 was raised during Infantile Spasms Awareness Week (October 11-17) that will go towards researching the cause and treatment of this ultra-rare form of epilepsy.
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"Due to its rare nature, infantile spasms (IS) has not been studied as extensively as it should be," said Lawrence Brown, M.D., Associate Professor of Neurology and Pediatrics at Children's Hospital of Philadelphia. "The research that this money funds will be an important step that will hopefully shed more light on a condition that needs to be better understood by the child neurology community, pediatricians and caregivers."
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Dr. Brown, who is also president of the CNF, said the goal of the first-ever IS Awareness Week was 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 made 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.
To raise money for IS research, more than 250 child neurologists stopped by the CNF booth at last week's annual meeting of the Child Neurology Society to pledge their support for better education of infantile spasms.
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. The money raised for IS research was also provided through an unrestricted educational grant from Questcor.
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 represents the 1,300 child neurologists of North America. Its mission is to advocate for children with neurologic disorders; to promote the career of child neurology with medical students; to fund child neurology research; and to provide vetted educational materials for the health community and parents.
For more information on the CNF, please visit www.childneurologyfoundation.org.
Alanna Peer 952-641-4466 [email protected]
SOURCE Child Neurology Foundation
