Children’s Cerebral Palsy Movement Founder Debbie Fragner joined the Critical Mass Radio Show this week to talk about the inception of CCPM, what motivated her, and about our upcoming Cerebral Palsy Kids Walk/Run. Her answers are heartfelt, gripping, and inspiring.
Debbie went into great detail about the upcoming Cerebral Palsy Kids Walk/Run, and why the event is so important for children with CP, and the community at large. You can listen to her talk about the Walk/Run below.
You can listen to the entire podcast here!
Critical Mass) The Cerebral Palsy Kids Walk/Run that occurs concurrently with the Oso Fit 5K Fun Run happens in just a few short weeks – on March 3rd. Can you tell us more about this event?
Debbie Fragner) In the spirit of wanting to unify the cerebral palsy community and to provide fun and therapeutically meaningful activities for them to partake in, my board dreamed of sponsoring a Cerebral Palsy Kids Walk/Run. After months of research and the expert help of three avid runners on our board, a perfect opportunity presented itself, allowing us to collaborate with the incredible City of Mission Viejo on their first annual Oso Fit Fun Run and Health Fair. Already charity minded, the city’s Recreation Manager agreed to include a Kids Walk/Run for children of all abilities, which gave an awesome opportunity for Children’s Cerebral Palsy Movement’s dream to come to life.
The result is a Cerebral Palsy ‘run within a run’, a perfect opportunity for CP children to participate in a safe and supported environment, side by side with their peers and with other able bodied children. The course options are ¼ mile and ½ mile. Pre-event stretching will be led by orthopedic specialists and track team members, in an effort to model and ensure safe stretching by the kids.
We are thrilled to have the support of the Capistrano High School Boys Track Team to serve as running buddies to support and encourage the children along the course. Also, there will be a number of actors, including RJ Mitte, Aaron Schwartz, Niko Pepaj, Kate Tomlinson, Lacianne Carriere and others, present to interact and cheer on the kids. Best of all, each child who participates will receive a medal to commemorate their accomplishment. One cannot underestimate the significance of this, as these children may never have received a medal in their lives…
Being a terrifically festive event, we are planning a post-event reception complete with live entertainment, food and beverage from True Foods Kitchen and Tutto Fresco Kitchen & Bar, and ample opportunities to learn firsthand of all of the important community programs being rolled out in the coming months. And, there will be a few other surprises as well!
So, what we are really hoping for is that the community at large will band together and come out in force to participate in the 5K Fun Run and the Kids Run. Of course, when given the opportunity, we hope that all who register will designate Children’s Cerebral Palsy Movement as their charity of choice, as the fine city of Mission Viejo will donate those pre-registration fees back to us to help offset our nonprofit’s investment in putting on the Kids Run.
Critical Mass) [Can you share] an interesting story from your professional path to today.
Debbie Fragner) My professional journey has taught me to “Be the change you wish to see in the world”. (Mahatma Gandhi.) And then, in doing so, choose your traveling companions very, very wisely.
Here is how this wisdom has played out within my own life as of late… Having shepherded my own daughter with Cerebral Palsy through intensive 10 times a week therapy sessions for years on end, we were finally at a critical turning point in the fall of 2014. Like so many other children in this situation, my daughter was tired of toiling and longed to have fun, to have friends and to learn to explore physical activities previously thought impossible for many children with CP. She wanted to learn to dance ballet – a tough nut, for sure, for a child unable to stand or walk on her own.
My personal quest for answers uncovered a critical gap in the realm of CP rehabilitation that was begging to be filled. With little rehab research being done at the time, due to lack of government funding, the quest could have ended right there. But, that was unacceptable! After exhaustive research, my instincts gave way to a vision for an innovative way to ‘treat exercise as medicine’, where children with CP could engage in a physical activity they longed to do, while simultaneously receiving therapeutic benefit. The result? A resolution to risk starting a nonprofit and a ‘movement’ that could change the trajectory of how rehab happens in America, at the same time improving the quality of life and long term function for children with CP. The result was the design, funding and trial of an innovative therapeutic dance program called Ability Ballet, which would later be expanded to be a dedication to uniting and serving cerebral palsy children and their families through a myriad of much needed community programs.
In embarking upon this journey, I learned a critical lesson, in hindsight, that involved the need to choose one’s traveling companions wisely. The discovery was that people often operate from different places of understanding or motivation that can make or break a good plan. Still others may have good intentions, but lack the heart to get the job done. Innovation is not easy. Worthwhile, yes. Easy, no. One must ferret out like-minded people who share a similar passion and vision and are willing to do what it takes to bring it to fruition. Under those circumstances, the results can be amazing!
Critical Mass) Tell us about your organization and what makes it unique from other nonprofits within your disease group, in the minds of those you might serve or professionals dealing with this audience?
Debbie Fragner) When we started in the fall of 2014, there was very little going on in the way of innovative rehabilitation research for children with CP, so we started there. Our pilot research results proved the inherent wisdom in treating highly motivating ‘exercise as medicine’. Within the last three years, more research has been initiated by others, which is so good to see and, long term, will be very important for those living with CP. Having said that, no CP entity is currently focused on meeting the needs of these children and their families where they live, in the community, with a focus on uniting and serving them by providing important support, services and resources that address their daily needs that, long term can improve their quality of life and long-term outcomes.
We exist for this and thrive in designing meaningful community programs like our first annual Cerebral Palsy Kids Walk/Run on March 3rd; a CP Family Forum in collaboration with UCLA Orthopedic Institute on March 17; professionally facilitated support groups and educational seminars designed for CP caregivers; academic tutoring to bridge learning gaps for mind-capable fully mainstreamed CP children; Ability Ballet classes; a host of social and fun activities for CP children and families, and more.