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.
"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."
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.
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