Monday, March 25, 2013

Urge Congress to Fund Cerebral Palsy Research

Cerebral palsy affects more children than muscular dystrophy, multiple sclerosis, cystic fibrosis or childhood leukemia. But CP receives only a fraction of the government research funding these other disorders receive. I wish I knew why. I only know it isn’t right.
Not that these organizations deserve any less research support. I just believe cerebral palsy should warrant more attention. In the U.S., 1 in every 303 eight-year-olds has cerebral palsy. The odds are 1 in every 270 among African-American children. Yet, the cause of 80% of CP is still unknown.
I work with families of children with cerebral palsy on a regular basis. I know what kind of challenges they face, and what it costs to provide children with the kinds of therapies and services they will need the rest of their lives. I present these numbers in courts and around settlement tables. I am well aware that science has not found a way to prevent most cerebral palsy, or to cure it.
Without more research funding, it is unlikely this will occur anytime soon, which is a travesty. Dedicated research funding is practically nonexistent, according to the Academy for Cerebral Palsy and Developmental Medicine. The Centers for Disease Control and Prevention (CDC) has no specific funding for CP, and funds dedicated for CP by the National Institutes of Health (NIH) (only $22million for this year) is not for innovative, curative research, the academy notes.
Today is National Cerebral Palsy Awareness Day. Do your part to urge Congress to dedicate more funding to preventing, curing and developing effective therapies for cerebral palsy. Contact your elected officials. The 800,000 Americans who are living with CP today are counting on you.
For more information about the causes of cerebral palsy, read my blog “Your Child’s Cerebral Palsy: Preventable Mistake or Not?

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