Cerebral Palsy Child

There is nothing out there that can touch your heart like a
child. They can make you laugh. They can make you cry.
They can also break your heart.
When you see children, especially children with special
needs, it’s easy to put your own children into their shoes, and
ask yourself the question: What if? What if this happened
to my child?
It could have or maybe it did if you are reading this. And
if not your child, then it might be a grandchild, a niece or
nephew or maybe a good friend. Somewhere, somehow the
bittersweet experience of raising a child with special needs
will touch almost everyone at some point in their lives.
Nobody is immune. Not even you. So . . . what do you do?
This was the question facing Anna Marie Champion and
Cynthia Frisina Gray following the births of their girls,
Morgan and Cathryn, who were both diagnosed with cerebral
palsy when they were less than one year old.
“Reaching For The Stars: A Foundation Of HOPE For
Children With Cerebral Palsy” (RFTS, Inc.) was founded
by Anna Marie Champion and Cynthia Frisina Gray in late
2004. They are two determined mothers who met through a
doctor who treated both of their daughters. Anna Marie and
Cynthia share a common goal – to increase cerebral palsy
research leading to new treatments and hopefully a cure.
“We are two mothers determined to go above and beyond
what is currently possible to make a profound difference in
the lives of our children and others who suffer the negative
physical, emotional and social impact of cerebral palsy,” said
Champion. “We saw the need that exists for more progressive
research on the causes and possible cures and treatments for
children with cerebral palsy. We realized “if not us, then
who?” And “Reaching For The Stars was born,” said Gray.
Who will stand up for these children if not a parent?
RFTS first major event was the 1st Annual Parent CP
Conference held April 16 in Atlanta, Georgia. A sell-out
crowd, including parents from across the country and Canada,
attended the one-day event. Twenty-fi ve speakers covering
a wide range of disciplines converged for a unique day of
inspiration and information. More than twenty equipment
vendors, therapy clinics and suppliers of cerebral palsy related
goods and services were also represented.

“You don’t know how dynamic it is as a parent of a CP
child, to be able to actually see and touch many of the items
available to help these children,” said Anna Marie. It is
much more benefi cial to see and touch wheelchairs, adaptive
bicycles, positioning aids and bath seats than looking a
catalog or magazine. The conference was a signifi cant success
and we look forward to making it an annual event.
Reaching for the Stars is currently mobilizing parents, family
members, friends, doctors and therapists across the country
in a letter writing effort to the members of the United States
Senate Subcommittee on Health and Human Services and
the United States House Appropriations Subcommittee on
Health, Human Services, Labor and Education.
“These are the two primary congressional groups who control
funding to the CDC (Centers of Disease Control),” said Gray.
Basic research as to the cause of and ways to prevent cerebral
palsy are well overdue, especially in light of the fact that
currently more than 764,000 children and adults are affected
and yet cerebral palsy has not been studied in a meaningful
way at the national level. The timing is right to change this.
“We can’t afford to let these children be forgotten,” Gray
explained. “Lawmakers are waiting for us to speak up on
behalf of these special children.”
RFTS intends to target senators and congressmen in 36 states
in an effort to raise public awareness and support for cerebral
palsy research among key lawmakers.
“Our goal is to reach senators and congressmen with as
many letters as possible,” Gray said. “We need to make sure
that these lawmakers understand that this is important to the
hundreds of thousands of families impacted by CP”.
Contrary to common belief, about 80 percent of children with
CP have no well-defi ned cause for their condition. Despite
the introduction of modern prenatal testing, better obstetric
care and improved newborn intensive care, the prevalence
of CP has remained virtually unchanged over many decades.
Children with CP are at risk for other problems including
epilepsy and a variety of disabling conditions including
orthopedic deformities, vision and hearing loss, swallowing
and nutritional diffi culties, respiratory diffi culties and chronic
pain. All of these secondary disabilities exact a signifi cant
cost – both fi nancial and emotional – from our communities
and society as a whole. Some of these secondary disabilities
are potentially preventable, but have not been adequately
studied. The goal of RFTS is to change that.
Founded in 2004, RFTS, a national 501 (c)(3) non-profi t
organization, is committed to driving research to serve the
needs of children with cerebral palsy and their parents and
caregivers.
Reaching for the Stars 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 for cerebral palsy and
deliver measurable improvements in the lives of affected
children and their families.
“Research for cerebral palsy, particularly in children, is
under-supported and severely under-funded. This slows
progress towards new regenerative neurological discoveries
and limits the public awareness of Cerebral Palsy in
children,” explain Champion and Gray. The powerful
techniques of brain imaging and genetic epidemiology, used
so effectively for other conditions, have not yet been fully

utilized to investigate the major problem of CP among
our nation’s children, they say.
Still a new organization, RFTS is gearing its letter-writing
campaign as an important step in building awareness
of CP and increasing research to benefi t children and
the next generation of children. This is particularly
important since the CDC reports the incidence of CP in
children is much higher than childhood cancer, hearing
and vision loss, cystic fi brosis, and on par with the rate
of autism in children 3-10 years old – yet no comparable
study of CP exists.
“The goal of this campaign is to persuade specifi c
members of Congress that parents of children with
cerebral palsy do have a voice and are speaking up
regarding national cerebral palsy research. We are asking
that all family, friends and health care professionals will
contact their congressman and senator,” Gray says.

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