CNS Foundation contacted Cerebral Palsy advocate Lauren Wailer after seeing this courageous video of her speech at the Reaching for the Stars Family Forum in Milwaukee, WI on October 18, 2013. Lauren is an ambassador for Reaching for the Stars. Watch the video and read more about this motivated young woman below.
When now fifteen-year-old Lauren Walier learned that there was no dedicated line item for federal funding for Cerebral Palsy research, she got inspired to make a difference for the CP community.
Lauren attended a CP awareness event sponsored by Reaching for the Stars (RFTS) for National Cerebral Palsy Awareness Day 2011 at the Centers for Disease Control (CDC) where she heard keynote speakers and RFTS board members Michael Kutcher and John Quinn speak on the power of giving people hope. Quinn, a high-ranking military official who was admitted into the Navy despite having Cerebral Palsy, was particularly inspiring.
“There is a difference between having your parents say you can do anything and seeing someone else live their dreams,” says Lauren.
Lauren was never in denial about her condition, but was unsure about what it meant for her future. Would she ever have a career? Would she get married?
In response to a comment John Quinn offered to all the medical professionals in the audience, Lauren stood up, went to a dedicated microphone, and shared a personal story about an experience she had with a therapist, and the lasting impact his words made on her, cementing that hope is a strong rallying point.
For Lauren, the messages of hope spoken by others that evening with her condition were in complete opposition to those given to her by her therapist, who, when Lauren asked if she would always have cerebral palsy or get rid of it, the therapist point blank, said, “yes” and shook Lauren to the core.
"He was so rough and matter of fact," said Lauren's mother Sherry. “I told him we’ve never put Lauren in a box and never let cerebral palsy define who she is. We’ve always told her she can do anything in this world she puts her mind to. She’s strong and a fighter, after arriving into the world weighing only 14 ounces, we know she can do anything."
Lauren’s eloquent address to the group who gathered that evening at the CDC was magical, shared Sherry, and therapists and audience members came up to her afterwards to thank her for sharing her experience, including Michael Kutcher.
Lauren Walier. Photo courtesy of Sherry Walier.
Cerebral palsy (CP) is a neurological disorder that affects different motor functions resulting in physical disabilities. CP exists on a spectrum, meaning that the severity and depth of disabilities can vary widely amongst those affected.
Lauren is on the more moderate end of the CP spectrum. After that evening, Lauren felt so inspired to want to make a difference for those with Cerebral Palsy. Unlike some people who have severe cerebral palsy without a voice, Lauren said,” I do have the gift of my voice and I want to be the voice for those who do not have their own!" She seeks to be a voice for others who are less able to advocate for themselves.
For Lauren, how you get through things is how you handle what is given to you.
“All in the way you’re raised. My parents raised me with the knowledge and support to be confident in who I am and what I will become.”
Lauren has said, “When you have cerebral palsy, everything you do is a fight against gravity.”
How do you defy gravity?
When Lauren was in elementary school, she and two friends decided to jump rope at recess. It was an activity that could have left Lauren on the sideline. Luckily, Lauren’s friend had a different idea and encouraged Lauren to jump. It took a some time and great patience from her friends, but Lauren went from barely getting her feet off the ground to jumping rope.
“When you have Cerebral Palsy, it takes so much energy to accomplish certain tasks,” Lauren noted.
Lauren’s gym teacher, Mr. Johnson, had his students play a game where a whistle was blown and students had to run from one side of the gym to the other before the second whistle blew. The distance Lauren was asked to run was shorter than the distance her peers were. By the end of the game, Lauren was the last person standing but faced ridicule from some because the distance she ran was shorter. Mr. Johnson told these students, “She deserves as much credit, or more, because she worked harder running that distance than anyone else.”
As an almost sixteen year old, Lauren could use her time for a lot of things, surely not trying to jump rope. These stories exemplify Lauren’s commitment to take what she was given and handle it with positivity. She spends her time taking lemons and making lemonade.
When she was younger, getting dressed for school in the morning took a long time and required the help of her mother. Lemons? Now Lauren is able to dress herself, and working towards reaching her goal of getting dressed while standing the entire time. Lemonade.
The concept of “making lemonade”, both as a life motto and as a literal practice is deeply rooted in Lauren’s role as a young advocate.
At the age of six, Lauren and her friend saw a “Today Show” segment on Alex’s Lemonade Stand, a lemonade stand program that raises money for pediatric cancer research. She rallied friends, family, and the community and set up a lemonade stand in her community. The price of lemonade was a donation of choice, and Lauren was able to send $700 to Alex’s Lemonade Stand.
In June 2013, Walier hosted her first lemonade stand for CP research in Georgia. At a local breakfast restaurant, Lauren’s story was placed on the front page of the menu, and when she set up shop outside a few days later, people just came by to donate and offer words of encouragement. Over two days, Lauren raised $1300.
This inspired the young advocate to begin her own nonprofit organization, Make Lemon Aide for Cerebral Palsy, whose mission states "the Make Lemon Aide organization evolved from the tender heart of 15-year old Lauren Walier in her journey of challenges and self-discovery as a young person with cerebral palsy (CP). Through her innocence and simple belief that we can all make a difference, the organization's goal is to raise awareness of the condition by engaging the talents and abilities of young people. Through this effort, the organization raises funds to support the development of new treatments, advanced research, and create a public forum of information exchange to improve the quality of lives of individuals and families affected by CP."
Lauren, Sherry, friends, and supporters of Make Lemon Aide for Cerebral Palsy. Photo courtesy of Sherry Wailer.
Make Lemon Aide for Cerebral Palsy has so far raised over nine thousand dollars for CP research. The idea of a lemonade stand has taken root due to its accessibility- six year old Lauren and fifteen year old Lauren were both able to launch successful stands. People nationwide have the ability to launch a lemonade stand in their community.
Upcoming events include a “Lemon Tree for CP” program launched at Rollins College in Winter Park, FL, and a “Walk in Lauren’s Shoes” walk/run event in Buffalo, NY. The “Lemon Tree” idea has the motto “It all stems from you” and resonates with a “Pay It Forward” idea, whereby the more people you affect will in turn affect others. The “Walk in Lauren’s Shoes” event comes from something one of Lauren’s doctors had said, “A person with cerebral palsy who can walk is like putting a 100 pound cinder block on each leg and going about your day. That’s the difficulty and amount of energy consumed”. The walk will include participants wearing ankle weights to get an idea of what having cerebral palsy is like.
Lauren has big goals with Make Lemon Aide for Cerebral Palsy, stating that she seeks to become a powerhouse for CP research funding akin to Susan G. Komen and breast cancer research. She imagines a world where cerebral palsy will no longer be known as the "forgotten disease", but rather a condition that is better understood and more commonly spoken about. With so many different CP organizations working for the same thing, Lauren hopes she can eventually streamline CP research funding to benefit everybody that’s affected.
When asked if Lauren had words for anyone who has been given lemons, she said “Especially children, whether five or twenty, you can do ANYTHING you set your mind to. Just because you’re physically disabled doesn’t mean that you can’t do what you want to. You shouldn’t have to feel doubt. You shouldn’t feel like you can’t do the things that you want to. Look at things with a positive outlook and attitude, because if you look at things negatively, nothing but negative can come.”
It’s about the cerebral palsy community, but Lauren wants to be known in her lifetime for the work she is doing: taking lemons and making lemonade.
Learn more about hosting a Lemon Aide Stand, cerebral palsy fundraiser, Walk in Lauren's Shoes, or Lemon Tree event in your community, or to make a direct donation, at the Make Lemon Aide for Cerebral Palsy blog post.
Visit Lauren’s Facebook Page: Make Lemon Aide for Cerebral Palsy
Learn more about becoming an ambassador for Reaching for the Stars at the CP Kids Coalition page.