The True Founder of CPRN

Today is National Cerebral Palsy Awareness Day, the day dedicated to creating awareness about the 17 million people worldwide who live with CP every day. In an effort to foster awareness, I want to share my story and hear about your story. I founded CPRN two years ago with a core group of dedicated professionals and along with our community of people with CP, parents, medical practitioners and advocates, we are living CP Awareness, really every day, by trying to improve outcomes for people with CP. We are thankful to Reaching for the Stars who have successfully advocated with Congress for this awareness day for so many years!

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The impetus for starting CPRN is my 12-year-old son William who has spastic diplegia CP as well as hydrocephalus. So while on a daily basis, I am writing grants for funding, working on the CP registry and planning the Research CP workshop, I am also a parent first, who drove to many PT and OT appointments over the years, oiled ball bearings on rusty walkers, modified a treadmill for walking therapy, researched orthopedic surgeries and joined non-adaptive kid’s karate with my son because he was nervous about joining with typically developing children. One of his fellow karate students said to me, “You are a really big kid” as I as the only adult in a sea of 25 children. But this is what you do when you want your son to have this experience and it was the only way he would join.

We are trying therapies and treatments to help our son avoid pain as an adult and to keep him as functional as possible for as long as possible. And we realized that most of the treatments and interventions don’t have long term outcomes research behind them — so how do you choose what works and what is effective? That is why CPRN was developed, to answer some of these questions.

Yesterday, my wife Lori (who also helps to write and edit content for CPRN) and I were at an orthotics appointment at Seattle Children’s Hospital with William because he is in a new type of orthotic called AFO FCs (Ankle Foot Orthosis Foot Combination) developed in Wales by a PT named Elaine Owens. It is traditional bracing but with a modified shoe with a wedge internally and externally to correctly align the skeleton and stretch muscles gradually. Overtime, the wedge becomes lower and eventually the hope is that he will no longer need a modified shoe but perhaps just a lower AFO. Will it work? We don’t know but we hope so. If it works, William will hopefully avoid another orthopedic surgery. The hardest part of some of these therapies is the social and emotional part. Our son William can’t run in these orthotics (yet) so he is worried about recess and how he will have fun with his friends. If he will get teased about his new shoes. It has been hard for him to keep up with his peers without the orthotics. So we “get” what other families go through about trying different therapies. And we are trying to translate our own personal story to a platform that will help others, no matter what type of CP or degree of CP. But “getting it” and “living it” are different so that is why I have partnered with Michele Shusterman of CP Daily Living and CP NOW, who has a different experience with her daughter, to lead the engagement of our community.

The continuum of CP varies greatly…there are some adults and children with CP who use wheelchairs, walkers and crutches and some are more mild and don’t need an assistive mobility device, some are verbal and some are not or somewhere in between, some have typical cognition and some do not or somewhere in between, some have vision issues and some do not…some have hearing issues and some do not; so no matter where someone falls on the continuum, we at CPRN are hoping to help the entire community through a registry and comparative effectiveness research; and it all started with a boy named William.

Along this journey, I have been fortunate to meet many adults with CP and families who are impacted by CP in addition to working with many dedicated and caring PTs, OTs, doctors, researchers and community advocates. Many thanks to the CPRN leadership team and all of the investigators who work so hard every day in their professional lives in addition to CPRN. Thanks to CP NOW for partnering with CPRN on Research CP – our collaborative program of webinars, surveys and an upcoming workshop. It is one way we are trying to educate and keep the conversation going about CP.

So please share your brief story of how CP impacts your life whether you are an adult with CP, a parent or family member, a medical practitioner or a community advocate. Please include a picture too. Send these to CPRN is going to create a Community page called My Story of CP to share your stories and each week, we will highlight one to create ongoing awareness in honor of National CP Awareness Day.