New CDC Study Shows Increase in Cerebral Palsy - 1 in 278 Children Affected

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Reaching For the Stars. A Foundation of Hope for Children With Cerebral Palsy (RFTS, Inc.) reports more children have Cerebral Palsy than pediatric cancer, Down syndrome and hearing & vision loss.

Recent scientific advances in the understanding of brain development and plasticity offer much hope for increasing our understanding of this disorder and stimulating the development of novel strategies to optimize functioning - but are not possible without funding to attract and support the scientists needed to provide these breakthroughs.

According to Reaching for the Stars. A Foundation of Hope for Children With Cerebral Palsy, a new Centers for Disease Control and Prevention (CDC) study, released today in Pediatrics: Official Journal of the American Academy of Pediatrics, shows an increase in the prevalence of cerebral palsy (CP). The new study shows an average of 3.6 per 1,000 8 year-old children or about 1 in 278 children - higher than the previously accepted numbers of about 1 in 666 children. This is the first report published by the CDC ADDM CP Network regarding the prevalence and characteristics of Cerebral Palsy, the most common cause of motor disability in childhood affecting over 800,000 Americans.

The study, Prevalence of Cerebral Palsy in 8-year-old Children in Three Areas of the United States in 2002: A Multisite Collaboration, was conducted in three sites around the country and reported the highest prevalence among boys, African-Americans and those living in low- and middle-income neighborhoods. Prevalence rates were lowest among Hispanic children.

"This CDC report offers a ray of hope that more scientists will now take interest in Cerebral Palsy and proves what many parents of children with Cerebral Palsy have already believed to be true - more children have Cerebral Palsy than originally thought," said Cynthia Frisina Gray, Co-Founder of Reaching for the Stars. A Foundation of Hope for Children With Cerebral Palsy, and mother of a 7 year-old daughter with cerebral palsy. "Children with Cerebral Palsy have been the forgotten children of medical research for many years and we are excited to see this is starting to change." RFTS, Inc. is the only parent-led pediatric cerebral palsy foundation in the U.S.

The new CDC report serves as another reminder to parents of how medicine in the US, with the focus on cutting-edge treatments, can still fail hundreds of thousands of children impacted by a common yet complex disorder. Medical researchers are still unsure about the causes of Cerebral Palsy. However, two of the top risk factors--premature births and multiple births--have increased in the United States despite the introductions of modern prenatal testing, improved obstetric care, and newborn intensive care technologies.

"This report of prevalence of children with Cerebral Palsy is a much needed wake-up call to health policy makers and federal research funding agencies to make CP a far higher national priority," says Diane Damiano, PhD PT and current President of the American Academy of Cerebral Palsy and Developmental Medicine. "Recent scientific advances in the understanding of brain development and plasticity offer much hope for increasing our understanding of this disorder and stimulating the development of novel strategies to optimize functioning - but are not possible without funding to attract and support the scientists needed to provide these breakthroughs."

The parent advocates of "Reaching for the Stars" have been instrumental in urging Congress to fund national cerebral palsy surveillance and epidemiological research by the CDC. Through the recent support of Senators Barack Obama (IL), Dick Durbin (IL), Tom Harkin (Iowa) and Johnny Isackson (GA), a Congressional report was recently requested asking the CDC look at the issue.

"The lack of federal funding for national CP surveillance and epidemiological research is a source of continued frustration for parents and caregivers of children with CP. This kind of research could uncover the causes of CP which could lead to new treatments and a cure," says Anna Marie Champion, Co-Founder of RFTS and also the mother of a daughter with cerebral palsy.

Parents resort to sometimes risky surgical treatments and the use of off-label drugs like Botox to try and help their children since there is little consensus among the American medical community of how to best treat cerebral palsy despite how many children have it. "Parents feel lost and hopeless. There are very few dedicated CP resources out there and treatment options really haven't changed very much in 50 years," adds Cynthia Frisina Gray.

Cerebral Palsy refers to a common group of neurological disorders that affect a person's ability to move and to maintain balance and posture. CP is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; or during infancy. Faulty development or damage to motor areas in the brain disrupt the brain's ability to adequately control movement and posture. The symptoms of CP vary from person to person. A person with severe CP might not be able to walk and might need lifelong care. A person with mild cerebral palsy might walk a little awkwardly but not need any special help.

For more information about Reaching for the Stars. A Foundation of Hope for Children With Cerebral Palsy, a national nonprofit 501 c3 foundation, please visit http://www.reachingforthestars.org.

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CYNTHIA FRISINA GRAY
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