Making Moves For Cerebral Palsy
Cerebral Palsy is the number 1 motor disability in the country. It impacts 1 in every 323 children born, making it the # motor disability in America, and yet national funding dedicated to CP rehabilitation is extremely limited.
A diagnosis can be one of the worst moments for parents, and often leads to a loss of hope, and the feeling that all of their dreams are destroyed. For CP families, hope is a rare occurrence.
Imagine being a parent trying to create a sense of "normalcy" for your CP child, but being unable to take part in so many of the activities and events that them. So many CP families feel isolated and alone, and fear that there is no safe or comfortable way to explore the world with their CP child. That isolation is not only terrible for their mental health, but it prevents them from becoming part of the broader community, one that offers them the support they desperately need.
Each year, more than 10,000 babies are born with Cerebral Palsy (CP) – a movement disability caused by damage to the developing brain during pregnancy or shortly after birth. The symptoms of CP can range from issues with posture and walking to seizures, problems swallowing, and mental impairments. Up until now, Cerebral Palsy has been treated as a permanent, life-long condition, with little ability for improvement.
CCPM founder Debbie Fragner clearly remembers the moment she heard that her daughter had CP. After the initial shock faded, she dedicated herself to helping parents and kids who deal with CP on a daily basis, finding a way to prove to them that their dreams can still happen by giving these precious children the chance to do things they thought impossible.
It is this motivation that has helped CCPM continue to grow, and given Debbie the chance to meet other parents and show them that they can dream again, that they aren’t alone in the world, and that they don’t need to hide any longer. There are thousands of families in the country that have are going through the same struggles, and we are dedicated to helping them navigate the trials and tribulations that come with CP, provide the tools to help educate others and to build strong support systems across the country.
As we help bring families together and offer unique experiences for children with CP, we continue to prove that we are so much stronger together. With your help, we hope to show the whole world that Cerebral Palsy is a diagnosis, NOT a destiny!
Research shows that adult stroke victims can recover from brain injuries, so why not children who have experienced brain injuries, too? We believe that with early intervention and a whole-body approach to healing, children can achieve great improvements in their quality of life and long-term function.
We are on a mission to create programs for both caregivers and children because we believe it’s essential to not only address the physical development needs of children with CP, but also to provide a support system for the entire family.
What We’ve Done:
As a part of our first successful initiative, CCPM designed an innovative therapeutic dance program in the guise of a group ballet class – later dubbed Ability Ballet. Guided by neuroscientific research, the goal was to improve gait, balance, and overall quality of life using rigorous repetitive movements, intellectually engaging activities, and live music. We extend gratitude to our collaborators at University of California-Irvine’s Pediatric Exercise and Genomics Research Center, UCI’s Dance Department, Chapman University, and CHOC Children’s Hospital of Orange County, as their expertise was instrumental in testing the validity of this innovative technique’s success. The results of this innovative pilot study showed statistically significant improvements in the participating children’s cognition, physical function and feelings of self worth. The Ability Ballet protocol was subsequently transferred into a community setting so that CP children with a passion to dance ballet, could do so safely and with therapeutic benefit.
We also completed our Second Annual Cerebral Palsy Kids Fun Run in Mission Viejo, California. This walk/run provided families with a day to get outside, exercise, and connect with other families in our community. With our events, we combine forces to give children with CP the lifestyle they truly deserve. It was an opportunity to break through important societal barriers, as CP children of all presentations got to participate side by side with able-bodied children and parents.
Our resounding success at our springtime event, Hop To It! Egg Hunt, was a result of the many people who came together to volunteer and support the special needs community. Overall, 650 people attended; 350 of those being children and 61 children participated in our magnetic egg hunt. We are so thrilled with the turnout this year and look forward to an even brighter outcome in 2020.
For the holiday season, we are bringing back our Dare To Dream Christmas Extravaganza! This is a magical holiday event created to give CP families a night of love and support made just for them! Open to both CP families and able-bodied families, this is a chance for families that are often isolated during the Christmas season to enjoy a party with the entire family and to create important family memories. Last year, we hosted more than 220 guests...150 of them impacted by a diagnosis of CP. The joy and magic in the children's eyes always keeps us coming back for more.
To be able to carry out our important work, we have relied on partnering with passionate individuals and businesses who have proven to be true Dream Givers. Working with hospitals, universities, physicians, cities, restaurants and so many others has given us the opportunity to change the way others perceive Cerebral Palsy and to show these families that there is reason to dream again, to achieve a brighter future.
Please help us spread the word and invest in changing the lives of these precious families. Improved quality of life is within reach. Your donation today means a better future for a child with Cerebral Palsy tomorrow.
Frontline Communications – a premiere national medical publisher – does an annual issue of Rare Neurologic Disease. It is published in March. This year they decided to run a ‘special child neurology section’ on pediatric spasticity, and Ipsen Pharmaceuticals was gracious enough to sponsor it.
Children’s Cerebral Palsy Movement was invited to write two sections of a three-section article on Pediatric Spasticity, thanks to our colleagues at the Child Neurology Foundation. Please click on the link to the special report and click on the Pediatric Spasticity tab. Our section can be found on page 17 of this prestigious publication.
It is being distributed directly to 18,500 Health Care Practitioners, as well as being distributed at all 10 major industry meetings that Neurology Reviews attends throughout the year.
Please share this good news with your network of friends as this shows that Children’s Cerebral Palsy Movement is on the move. So thankful for your continued support!