Message from Cynthia Frisina, Executive Director and Founder, Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy. Mom of 12 year old daughter with Cerebral Palsy.
Happy Wednesday everyone! With great excitement, I want to remind you that March is National Cerebral Palsy Awareness Month and March 25th is National Cerebral Palsy Awareness Day. Why is this so important you might ask, when there are so many different kinds of awareness days and months all year long? It might be hard to imagine that these awareness days make much of a difference. But they do.
It’s important to mark March 25th, National Cerebral Palsy Awareness Day for three main reasons:
- This is the only “official” Cerebral Palsy Awareness Day as designated by the U.S. Congress. That’s a pretty big deal if you ask us. Over 800,000 Americans, and over 17,000,000 million people worldwide are impacted by Cerebral Palsy, the most common motor disability in children. Wow! Those are breath-taking numbers, despite the shame-worthy lack of awareness and research funding. Parents from all over the U.S. wrote in to support this National Cerebral Palsy Awareness initiative and we thank Senator Johnny Isakson (GA) and Senator Robert Casey (PA) over the years for making this a bipartisan declaration. Please Tweet them to show your thanks and to support this awareness day for 2013.
- We need to show the world we care about Cerebral Palsy. This means letting medical institutions, the media, lawmakers, the general population, neighbors and friends know this is an important public health issue. If we don’t show that this is important, why should anyone else? This brings me to a topic we’ve touched on in the past but people are reluctant to talk a lot about…
- If we don’t speak up about National Cerebral Palsy Awareness Day, no one else will. I must be honest and tell you that we’ve had a number of leading researchers, pharma companies, lawmakers, clinicians ask “Why don’t the parents of kids with cerebral palsy speak up more?” “Why haven’t they demanded more research, new treatments, better education and recreational programs for their children like groups X, Y, Z?” I’m often at a loss for words when I hem and haw about how to best answer these questions accurately. Frankly, I don’t really know the entire answer why. Have families been too overwhelmed, or felt too hopeless? Has there been shame or lack of understanding that has kept families quiet? Did they just think that nothing could be done? I’m not sure about the past, but one thing I know for sure is that we are changing this for the future.
Everyone has their own set of of beliefs, but I can tell you without question that, together, we have the power to make a profound and lasting difference in the lives of people with Cerebral Palsy right now. And it begins with a change in belief. A belief that children and adults with Cerebral Palsy deserve more – more research into Cerebral Palsy cause and prevention, more research into Cerebral Palsy treatment options, new thinking about the standard of care, more clinicians and scientists who specialize in Cerebral Palsy. A belief that the brains of people with Cerebral Palsy are just as “plastic” and just as worthy of advanced treatment protocols as other disorders impacting far fewer people, yet receiving far more funding and research attention.
Do you agree with me? Have more to add or share? Please Tweet us at @Reach4Stars and let me know. Let’s get this discussion going! The time is now.
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Have a wonderful day!
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