Cynthia Frisina is the mother of a daughter with cerebral palsy, Vice President of Partnerships, Cerebral Palsy Foundation, AACPDM Community Council, CPISRA Global Advisory Board, and Creator of National Cerebral Palsy Awareness Day.
Sixteen years ago this month I sat in a doctor’s office, learning that my 2-year-old daughter had cerebral palsy (CP) after being concerned for more than a year that she wasn’t meeting her developmental milestones. I didn’t understand at the time that cerebral palsy was the most common motor disability in children, impacting more than 1,000,000 Americans and more than 17,000,000 people worldwide. No one explained to me that cerebral palsy is caused by an injury to the developing brain, nor the concept of neuroplasticity, nor the importance of early diagnosis and intervention in terms of improving outcomes. We were sent on our way with very little in the way of next steps, information or hope.
Thank goodness times are changing because of families, individuals with CP and clinicians who have worked hard to change the status quo. As a result of years of relationship building and advocacy, we are now seeing promising new research initiatives, exciting collaborations, and major corporations like Lexus, Gillette, Microsoft, Apple, Allergan, Ipsen and others supporting initiatives that are improving the lives of people with cerebral palsy. America is taking notice.
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“It’s been incredible this year to witness major brands realizing the importance of broader representation in their advertisements. I believe it’s the beginning of a snowball effect towards supporting our cerebral palsy awareness efforts which ultimately will contribute to funding for more research,” explains Christina Smallwood, mom of a 6-year-old daughter with CP and creator of @fifiandmo.
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What a change this is from when my daughter was diagnosed with cerebral palsy 16 years ago. When we initially received her diagnosis, I assumed there must be standards of care, treatment protocols, parent support, federally funded research and even a national cerebral palsy awareness day where the community comes together – like there was for almost every other disability. I couldn’t have been more mistaken.
Joining forces with another determined mom, we formed a volunteer nonprofit organization in 2004 called Reaching for the Stars: A Foundation of Hope for Children With Cerebral Palsy — an education and advocacy group run by parent volunteers with the goal of improving the lives of people with cerebral palsy and changing the status quo.
Together, we worked to establish National Cerebral Palsy Awareness Day in 2006 through Congressional support to bring attention to the fact there wasn’t federally funded research for cerebral palsy despite it being so common. We collaborated with Senator Johnny Isakson (Georgia) and his staff to begin the process of establishing March 25 as National Cerebral Palsy Awareness Day. Senator Isakson supported this initiative since 2006, alongside Senator Robert Casey (Pennsylvania), and Senator Maggie Hassan (New Hampshire) in subsequent years. With Senator Isakson’s recent retirement, Senator Kelly Loeffler (Georgia) also recognized the importance of this national awareness day and has continued the support of National Cerebral Palsy Awareness Day as the lead Congressional sponsor for 2020. We could not be more grateful for the support of these committed U.S. Senators for the past 14 years.
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With March 25 established as National CP Awareness Day, we selected the color green to represent the day. Little did we guess that soon we would be turning America green with support of National Cerebral Palsy Awareness!
Jennifer Lyman, mother of a teen son with CP and Chair of the Community Council for the American Academy for Cerebral Palsy and Developmental Medicine explains, “National Cerebral Palsy Awareness Day celebrates the abilities, capabilities, diversity, and extraordinary accomplishments of those 1,000,000 Americans who live with cerebral palsy. It may only be one day a year, but for those of us who love someone with CP, it serves to highlight the need for continued research, education, and advocacy that will allow our loved ones to achieve their potential.”
In 2014, we expanded National Cerebral Palsy Awareness Day to include the tradition of producing an annual green t-shirt that people everywhere could wear to show their support and created a symbolic green ribbon. We increased our research advocacy, testified before Congress and established the hashtag #GoGreen4CP. The #GoGreen4CP movement began spreading across America. People of all ages and backgrounds embraced National Cerebral Palsy Awareness Day and began engaging their communities to participate in school events, wear green, light up buildings in green, encourage employment diversity initiatives, and advocate for change.
Michael Kutcher, motivational speaker, advocate, adult with CP and twin brother of actor Ashton Kutcher explains, “National CP Awareness Day provides a sense of community for all of us impacted by cerebral palsy and our families. All too often people go through life feeling they don’t belong, or they are different. National CP Awareness Day celebrates unity, promotes awareness and reinforces the importance of bringing us all together despite challenges.”
In 2019, Reaching for the Stars and the Cerebral Palsy Foundation merged together and have been committed to making an even greater impact for National Cerebral Palsy Awareness Month and Day. Our campaign GoGreen4CP.org is all about going green, celebrating diverse influencers in our community, and making a difference. Our campaign website educates people about CP, how to change perspectives and how to take action.
Wendy Sullivan, mom of a daughter with CP who has served on the boards of several CP organizations and has been involved in advocating for more cerebral palsy research for over a decade adds, “National CP Awareness Day is important to highlight the most common motor disability in children with lifelong impact and how it affects families and individuals. I’m passionate about the need for more CP research funding because I believe so much more can be discovered about causation, prevention and treatment. Bringing awareness is the first step to changing outcomes forever.”
Wendy’s daughter Kelsey, a high school senior, goes on to say, “As a teenager with cerebral palsy, I care about National CP Awareness Day because most people don’t think about people with CP on a regular basis. Awareness is the first step in helping others understand that having CP is a challenge, but you can live a full life, go to college and make a difference in the world.”
My youngest daughter, Cathryn — the original inspiration for National Cerebral Palsy Awareness Day 14 years ago — is now a senior in high school. She is straight-A honors student, adaptive track and field athlete on the cusp of a promising college experience combining academics and adaptive sports. She is a U.S. Paralympic High School Track and Field All-American. Cathryn’s remarkable progress, and the way that cerebral palsy is now being diagnosed earlier and treated more effectively, gives me great hope that National Cerebral Palsy Awareness Day and our related advocacy efforts are actually making a difference.
“National Cerebral Palsy Awareness Day provides people with CP a way to feel connected to a larger community, be represented in ways they haven’t been before and feel less alone while navigating the world with a disability,” Cathryn says.
However, there is much more to be done. In this time of great uncertainty, people with cerebral palsy and other disabilities risk being overlooked again. Many of those with cerebral palsy are at higher risk for secondary complications and illnesses like COVID-19. Cerebral palsy research remains underfunded compared to the number of people impacted, and unemployment is a very real issue.
In spite of the challenges, it’s energizing to see how our community is pulling together and supporting each other all over the world. As schools and employers scramble to put in place more virtual learning and working environments, new opportunities will be created. New approaches to healthcare delivery and serving the community will lead to fresh breakthroughs benefitting our community.
Meeting the needs of this moment and people with cerebral palsy will require our very best collaboration, compassion, creativity and patience — today more than ever — which is what National Cerebral Palsy Awareness Day is all about. We may have to social distance for now, but we can still wear green on March 25 and make a great impact. Together, we are stronger.
To learn more, visit Cerebral Palsy Foundation and Go Green for CP.
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