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Another Voice: Don’t let cerebral palsy remain ‘forgotten disability’

By Lauren Walier

Living with cerebral palsy (CP) for my entire life, I was excited to attend an event in 2011 at the Centers for Disease Control and Prevention in Atlanta called “Successful Adults Living with CP.” I was 12 years old at the time and was shocked and heartbroken to learn that there is no federal research funding for CP, which impacts nearly a million people in the United States and 17 million worldwide.

CP is a group of disorders that affect a person’s ability to move and maintain balance and posture, and is the most common motor disability in childhood. It is caused by a brain injury or abnormality, usually before childbirth, or after birth up to age 3.

After learning about the lack of funding (and the reason that CP is often referred to as the forgotten disability), I decided to do something to make a difference for children/individuals living with CP. The result, with the help of my family, was the creation in 2013 of the Make Lemon Aide Foundation for CP. March 25 is National CP Awareness Day, so we are working hard to educate more people and invite everyone to get involved.

We are particularly focused on helping children today. Our goals are to raise awareness of CP, to train therapists in the symptom recovery models protocols, to offer scholarships to people with CP to receive this therapy and to support research. I have been fortunate to use the symptom recovery models protocols, a new type of therapy that addresses the root cause of my disabilities with a customized and intense therapy plan focused on range of motion and strength.

This therapy has helped me become far more mobile and self-sufficient and has helped me to walk rather than use a wheelchair. More importantly, it has allowed me to function more like a typical teenager and participate in activities that were previously difficult for me.

Unfortunately, as a new therapy, it is not widely available because of a lack of therapist training. It is also not yet widely accepted by insurers and can be expensive. One of my dreams is for my foundation to be vast and contagious, like the Susan G. Komen Foundation, so we can help more kids like me to be able to have a chance to try this therapy – or others that may still need to be developed – so they can have as many opportunities available to them as any other kid.

Research and funding are necessary. However, there are lots of other ways to get involved. There are activities listed on our website, makelemonaide.org, that are perfect for kids, individuals, schools, businesses and organizations to help raise awareness and funds to help more kids living with the forgotten disability. Join us today to fight CP.

Lauren Walier, of Alpharetta, Ga., is a 17-year-old living with cerebral palsy and the founder of the Make Lemon Aide Foundation for CP.