Cynthia Frisina, Executive Director and Founder, Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy.
March 1, 2013 Day #1
Today we are excited to kick off our “30 Days of Inspiration, Information & Motivation” series supporting National Cerebral Palsy Awareness Month. For the next 30 days we will be posting new material every day designed to inspire, inform and motivate families of children with Cerebral Palsy. We’ve gathered together articles, videos, thoughtful essays and much more from the leading Cerebral Palsy clinicians and scientists around the globe, people impacted by Cerebral Palsy, parents of kids with Cerebral Palsy and some wonderful submissions from new members of the CP Kids Coalition who absolutely wowed us with their perspective and attitude. You won’t want to miss a single day!
Did you know over 800,000 Americans and over 17,000,000 people world-wide have Cerebral Palsy, the most common motor disability in children, with higher prevalence than muscular dystrophy, Parkinson’s disease, childhood cancer, hearing and vision loss, spina bifida, hemophilia, fetal alcohol syndrome or cystic fibrosis. Source: CDC, National Institute of Neurological Disorders & Stroke (NINDS/NIH)
It’s critical that we, the “family sector”, are leaders in the push to increase research funding and ensure that all promising research opportunities are pursued. If families don’t speak up for their children, who will? Without increased research focus on Cerebral Palsy, health care costs will continue escalate in the years ahead, while productivity decreases for both the children affected and the families caring for them.
We partnered with the American Academy of Cerebral Palsy and Developmental Medicine to develop a Funding for a Cure document that outlines the most current, documented facts about U.S. Cerebral Palsy research funding, and how little funding Cerebral Palsy research receives vis a vis other disorders and diseases affecting far fewer people. To really understand the challenge before us, it’s important to understand these critical facts.
For example, did you know that Cerebral Palsy receives no dedicated, line-item federal funding for Cerebral Palsy research at the CDC or NIH?? Zero. Zip. Nada. Does this cause to gasp and shake your head in disbelief? It should!! Can we change this? Yes we can, but it’s going to take families and individuals with CP standing together and raising our voices effectively.
Currently, there is no known cure for CP, and in most cases, (based on current scientific knowledge) it is currently not preventable. Today, medical experts and researchers agree that the critical mechanisms leading to CP are not well understood. Best practice guidelines are evolving. Despite advances in genetics, obstetrics and neonatology, we STILL do not understand much more about the underlying causes or prevention of Cerebral Palsy than we did half a century ago.
You can read more about this in our Funding for a Cure document and we encourage you to do so. There is a lot we can do this very month to complete the process that has been started in Washington and we will be giving you more information about this throughout the month.
And now for some wonderful inspiration from the Boyd Family. Their son, Carson, has Cerebral Palsy and this is their beautifully told story of inspiration and hope. Dr. Hank Chambers, pediatric orthopedic surgeon at San Diego Children’s Hospital, and member of RFTS Medical Advisory Board is featured in this wonderful documentary .
Enjoy this story of hope and enjoy your day!
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