Pediatric Cerebral Palsy Foundation Launches National Letter-Writing Campaign For Federal Research Dollars

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On June 6th, 2005 across the country thousands of parents, caregivers, friends, and family members of children with Cerebral Palsy joined in the first-ever nationwide letter-writing campaign urging Congress to establish federal research funding for Cerebral Palsy.

Between the hours of 9am – 11am on June 6th over 10,000 letters and emails were sent to specific members of Congress requesting their support of cerebral palsy research.

What really causes Cerebral Palsy? How can Cerebral Palsy be prevented? To find these answers, a new national non-profit research and advocacy group started by two mothers of children with cerebral palsy, Anna Marie Champion and Cynthia Frisina Gray, was launched earlier this year. The name of the foundation is “Reaching For The Stars. A Foundation Of Hope For Children’s With Cerebral Palsy” (RFTS, Inc.) “There is a critical need for federally funded Cerebral Palsy research” explains Cynthia Frisina Gray, Co-Founder of RFTS, Inc. “These have been the forgotten children of medical research”.

The Centers for Disease Control and Prevention (CDC) reports the incidence of cerebral palsy in children is much higher than childhood cancer, hearing and vision loss, cystic fibrosis – and on par with the rate of autism in children 3-10 years old – yet no comparable study of Cerebral Palsy exists.

RFTS, Inc. is urging the public to reinforce that message by visiting the foundation website at http://www.reachingforthestars.org for more information and a contact list for their national Representative or Senator.

According to Anna Marie Champion, Co-Founder of RFTS, Inc., “The goal of the letter-writing campaign is to ensure that the Centers of Disease Control and Prevention (CDC) will be able to use the tools necessary and available today to prevent Cerebral Palsy for the next generation of children and determine the preventable causes of secondary disability among children today impacted by Cerebral Palsy”. Adds Ms. Champion, “We need more voices telling Congress that federal funding of cerebral palsy research is vitally important”.

"Despite the introduction of modern prenatal testing, sophisticated obstetric care, and improved newborn intensive care technologies, the prevalence of Cerebral Palsy has remained virtually unchanged over many decades and has not been studied in any comprehensive way since 1985", said Dr. Janice Brunstrom, Director of the Cerebral Palsy Center at St. Louis Children's Hospital and a member of the RFTS, Inc. Medical Advisory Board. "This critical research is necessary to help develop a better understanding of the root causes of cerebral palsy and its exact frequency in the population as we work toward a cure and new treatments".

Over 764,000 children and adults in the U.S. have Cerebral Palsy, a neurologically based group of chronic conditions affecting body movement and muscle coordination. It 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. There is currently no cure. Contrary to common belief, about 80% of children with cerebral palsy have no well-defined cause of their condition.

Last year, Congress spent over $30 billion on medical research, but cerebral palsy research was virtually non-existent despite the hundreds of thousands of children and adults impacted by the devastating condition.

It is estimated that the lifetime care and medical costs for all people with cerebral palsy who were born in 2000 alone will total over $13.5 billion. Investigating the causes of Cerebral Palsy will significantly reduce the cost – to society, the government and to the hundreds of thousands of families impacted across the U.S. – as ways to prevent CP are uncovered.

About “Reaching For The Stars. A Foundation Of Hope For Children With Cerebral Palsy” (RFTS, Inc.)

Launched in late 2004, RFTS, Inc. a tax-exempt, national non profit organization, is committed to driving research to serve the needs of children with Cerebral Palsy and those parents and care givers involved in their care. It is the only parent-led group of its kind in the U.S. solely dedicated to pediatric cerebral palsy research and advocacy.

RFTS, Inc. is a world-class research foundation started by and for the parents of children with Cerebral Palsy centered on the belief that leading-edge pediatric research can lead to cures and new treatments of CP and deliver measurable improvements in the lives of impacted children and their families. Research for CP, particularly in children, is under-supported and severely under-funded...slowing progress towards new regenerative neurological discoveries. Please visit http://www.reachingforthestars.org or call 770.561.5950 for more information and to learn more about the national letter writing campaign.

Media Contact:

Cynthia Frisina Gray

“Reaching For The Stars. A Foundation Of Hope For Children With Cerebral Palsy”

404.281.9773

cgray@reachingforthestars.org

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