Pediatric Cerebral Palsy Foundation Launches National Letter-Writing Campaign For Federal Research Dollars
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.
(PRWEB) June 8, 2005 -- 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 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 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
e-mail protected from spam bots
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Source : http://www.prweb.com/releases/2005/6/prweb248419.htm