Cerebral Palsy Awareness—“I am aware”

by Michele Shusterman, CP NOW & CP Daily Living

 

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I am aware that CP is the result of an early brain injury or disturbance in brain development that occurs during pregnancy, during birth or shortly thereafter.

I am aware that CP refers to a group of movement disorders that interfere with how the individual initiates, coordinates and controls movement and balance.

I am aware that CP is a spectrum condition where people require different kinds and levels of support.

I am aware that CP is the number one cause of motor dysfunction in children.

I am aware that CP impacts more than 17 million people worldwide.

I am aware that funding for CP research has been dismal for decades.

I am aware that CP affects 1 in 323 children in the US and a large adult population that is often forgotten.

I am aware someone with CP who is unable to speak often can hear, understand and have the same intellectual capability as anyone else.

I am aware that more than 50 percent of people with CP are in chronic pain.

I am aware that parents of babies at risk for CP are scared and have little guidance about what the future holds.

I am aware that some people with CP are competitive athletes.

I am aware that adults with CP have many barriers to securing employment.

I am aware that more than 70 percent of people with CP have sleep disorders (from 2016 Australian data collection).

I am aware that people with CP wish to take part in as much of life’s activities as possible.

I am aware that there are adults with CP who are neuroscientists (i.e Dr. Kathleen Friel), neurologists (Dr. Janice Brunstrom) actors, psychologists, teachers, designers, leaders, business owners, artists, volunteers, advocates, lawyers and more.

I am aware that, in addition to motor dysfunctions, some people with CP may have conditions such as epilepsy, hydrocephalus, vision, hearing and communication disorders, and problems with eating, swallowing and digestion.

I am aware that some people with CP have mental health conditions, such as depression, as well as learning difficulties and more.

I am aware that parents of children with CP must become case managers because educational and therapeutic options are so uncoordinated.

I am aware that there is ZERO US federal money dedicated to studying CP.  ZERO.

I am aware that parents of children with CP cry privately because they feel guilt and fear and are exhausted.

I am aware that parents of kids with CP will do anything to help their child reach their greatest potential.

I am aware that adults with CP need access to doctors who understand the conditions associated with aging and CP.

I am aware that some people with CP hope for a cure and others do not.

I am aware that people with CP are prevented from participating in society because bathrooms, parking, venues and doctor’s offices are still not ADA compliant.

I am aware that we are diagnosing CP too late.

I am aware that people with CP have lots of different kinds of talents and abilities.

I am aware that some parents of children with CP just wish to hear their child say “Mom” or “Dad”, or to clearly understand what they are feeling.

I am aware that the CP community is lacking standards of intervention and care.

I am aware that parents are confused and overwhelmed having to make decisions about major surgical procedures without enough research to guide them.

I am aware that, in adults, traumatic brain injuries and strokes are treated immediately whereas, with babies, we wait years to see how they develop before starting therapy.

I am aware that 1 in 3 people with CP cannot walk.

I am aware that the CP community deserves more support, access to reliable resources and research into effective treatments that improve their participation and quality of life.

I am aware that CP NOW is making a difference by developing educational resource guides, providing community support and funding pilot studies that can be readily implemented to change lives NOW.

Visit cpnowfoundation.org to download your copy of The CP Tool Kit–From Diagnosis To Understanding.

CP Tool Kit

I am aware that CP NOW needs my support to do those things.

I am aware.  Make your donation today!  https://cpnowfoundation.org/donate/ No amount is too small when we all donate together!

For more information about CP visit cpnowfoundation.org and our blog/resource website at cpdailyliving.com.

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