The month of March marks Cerebral Palsy Awareness Month, and March 25th is National Cerebral Palsy Awareness Day. CNS Foundation spoke with Cynthia Frisina, Executive Director of Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy to learn more about the events happening throughout the month.
CNS: What inspired Reaching for the Stars to create a National Cerebral Palsy Awareness Month?
CF: In 2005 it occurred to us that, in addition to the fact that there was no dedicated federal funding for Cerebral Palsy research, there was also no National Awareness Day. It was as though people impacted by Cerebral Palsy and their families were invisible. We decided to ask Senator Johnny Isakson of Georgia (where we are headquartered) for help and he and his staff, along with Senator Robert Casey of Pennsylvania have been supporters of National Cerebral Palsy Awareness Day on March 25th ever since. We are very grateful for their support. This year is set to be our biggest year yet in terms of overall awareness and participation in National Cerebral Month events. We developed a very successful campaign "GO GREEN FOR CP" this year that is spreading like wildfire in the CP community. Also included as part of this initiative is a t-shirt sales fundraiser that has already sold over 1,000 green t shirts and been the most successful fundraiser that the tFund company has ever held. There are still a few days left to get your HOPE t-shirt and GO GREEN on March 25th!
What are some events occurring nationwide in honor of Cerebral Palsy Awareness Month?
Events are being held all over the United States in schools, through our chapters, medical institution partners and online. The Centers for Disease Control (CDC) is holding an event in Milwaukee, Wisconsin (one of their CP surveillance sites) in early March.
I'm excited that we also have important initiatives launching March to mark National Cerebral Palsy Awareness Month.
- #CPDOCTALK - a digital series of Twitter chats, Google Hangouts and interviews with the world's leading CP clinicians presented publicly throughout the month starting the second week of March.
- The official launch of our Reaching for the Stars CP Kids Coalition Student Ambassador program. We are SO EXCITED about this new program and have amazing kids and teens from all over the U.S. and Canada as part of our program. It's the first time that kids and teens with CP themselves have been given a voice and platform to officially share their stories and raise their voices. These amazing students will be doing a series of events in their schools this month to mark National Cerebral Palsy Awareness Day.
- In conjunction with National Cerebral Palsy Awareness Month, we are introducing an online petition this month requesting Cerebral Palsy research funding from Congress. More information on this petition can be found here.
Are there any additional ways for individuals to get involved with National Cerebral Palsy Awareness Month?
In addition to joining our CPDocTalk chats this month, signing our online petition for Cerebral Palsy research funding and joining our CP Kids Coaltion Student Ambassador program (if you are a kid or teen), people can also join our Twitter community, like our Facebook page and join our email database for quarterly newsletters of the latest research, education and advocacy news.
What goals are in place for National Cerebral Palsy Awareness Month?
- Increase awareness of what Cerebral Palsy actually is and for the critical need for Cerebral Palsy research funding for prevention, treatment and cure research.
- Increase awareness that Cerebral Palsy is not a disease - it is the most common motor disability in children.
- Increase awareness that the treatment protocol for CP has not really changed much in 50 years and it is time to change the therapeutic model for CP.
- Increase awareness that we, the CP community, have the power to change all of these things by speaking up!
- Increase awareness that there is a National Cerebral Palsy Awareness Day and Month!
What is the most important thing that people should take away from National Cerebral Palsy Awareness Month?
That together we can change the future of Cerebral Palsy. There is so much hope right now and new thinking, but it is critical that we all pull together and collaborate. Collaboration and raising our voices is what will make the difference. The CP Community as a whole has been silent too long because we have accepted the status quo that there's really not a lot that can be done to improve or "recover" from Cerebral Palsy. We haven't joined forces to speak up for much needed research into this important public health issue. It's mind boggling that the cause of Cerebral Palsy is unknown approximately 80% of the time. Why hasn't there been more research to find this out? As a community, we have not spoken up and demanded this. Why is there so much more research and treatment options happening for adults suffering from Stroke and Traumatic Brain Injury (TBI)? In many cases, the injury mechanism may be very similar but the therapy and rehab protocols are completely different. Standards of care for people with Cerebral Palsy do not exist. Could this be because we haven't demanded them?
What are common misconceptions or ideas about Cerebral Palsy does Cerebral Palsy Awareness Month seek to challenge?
The biggest misconception out there I think is that there is no hope and there is no possibility of a cure or significant improvement for people with CP. That simply isn't true based on all the available research. We also need to clear up the misconception that we can't do anything about these issues. We can and we will succeed if we speak up and collaborate! The most important thing that can happen is that we speak up as a CP community for the need for significantly more Cerebral Palsy research funding. Researchers follow the money, as you know. We need more of the best and the brightest to become more interested in Cerebral Palsy research as an exciting field, full of promise.
It's also important to not overlook the financial impact of Cerebral Palsy on families and our government systems. Our Federal Funding for Cure Fact Sheet lays out the costs that it is approximately $1.5M additional cost for a person with Cerebral Palsy vs. someone who does not have Cerebral Palsy. The bulk of this financial burden is on families and government programs. This does not even take into account related costs of lost wages and earnings of family members who might leave the workforce to care for a child with CP (like me!). Multiply this by 800,000 Americans and you see a staggering financial cost to society. Imagine the cost savings and increased productivity if the majority of Cerebral Palsy cases could be prevented or improved significantly in the early childhood years?
Is Reaching for the Stars working with any other organizations on Cerebral Palsy Awareness Month?
We have many collaborative partners we are working with to mark the month! The CDC, American Academy of Cerebral Palsy and Developmental Medicine, Blaze Sports America, Handicap This, March of Dimes, Shriners Hospitals, Cerebral Palsy International Research Foundation, United Cerebral Palsy, CNS Foundation and many others!
Why are awareness days and months important?
Awareness Days and months are important to bring awareness to a particular issue that wouldn't otherwise be there. National Cerebral Palsy Awareness Day and Month provides a platform for a variety of awareness activities across the U.S. in schools, medical institutions, online, in the media etc. to take place around a common theme of "Changing the Future of Cerebral Palsy". We have developed a wonderful green ribbon to mark the occasion. Thousands of school children and families who will be "Going Green for CP" on March 25th this year!
Why is Cerebral Palsy Awareness important to you?
My daughter, Cathryn, was born in 2000. She came into the world a 29 week, 3 pound preemie, and was diagnosed with Cerebral Palsy at 10 months of age because she wasn't moving properly. She was "floppy" and tight at the same time with all sorts of other things going on that led me to believe there was something seriously wrong. The exact cause of Cathryn’s Cerebral Palsy remains unknown. I was told originally that Cathryn would probably not walk or talk. I wasn't given any specific instructions or therapy interventions beyond suggesting I call the early intervention program in our state.
After absorbing the shock of Cathryn’s initial diagnosis, I began a frustrating search for reliable Cerebral Palsy information, treatment outcomes, research and resources. There was very little research available, and even less positive information, about the future of a child with Cerebral Palsy. I soon realized the amount of misinformation and the significant research and treatment gaps that existed for kids with CP. I looked for a national parent Cerebral Palsy organization and was astounded that there wasn't one. Where were the parents demanding research and a cure? Where were the researchers?
Cathryn, photo courtesy of Cynthia Frisina.
Taking matters into my own hands, I launched the nonprofit foundation, “Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy.” in 2005 with another equally committed mother of a young daughter with CP. Together, we were determined to fill a critical information, advocacy and education need for parents of children with CP. We thought, at first, this would be a small support group in Georgia. Boy, were we wrong! The need was so great that we had over 350 parents and standing room only at our first parent conference in 2005.
I am passionate about changing the Cerebral Palsy status quo. In a few short years, I am proud to say that “Reaching for the Stars” has become a worldwide beacon of hope for children with CP, championing global pediatric CP research, parent education and advocacy, and growing RFTS, Inc. into the largest global parent-led, pediatric Cerebral Palsy nonprofit foundation with a dynamic social media presence and expanding chapter network. We run educational family conferences across the U.S. and abroad in conjunction with major medical institutions. We partner with research institutions to help recruit for CP clinical trials. We have funded promising CP research in advanced brain imaging, neuroplasticity and stem cells animal models (delivery, dosage and cell type). We're in the process of establishing several monetary awards for promising young CP investigators around the world.
Successfully partnering with other organizations is very important to us and "Reaching for the Stars" is an official partner with the CDC and American Academy for Cerebral Palsy and Developmental Medicine. We were selected to serve on the World CP Day initial screening committee. We have an outstanding Medical Advisory Board made up of leading clinicians and researchers from around the world. We partner with like-minded global organizations in Canada, Australia, Asia and Europe including the CP Alliance (Australia), CanChild (Canada) and the Indian Cerebral Palsy Network. We are the only parent-led Cerebral Palsy nonprofit organization with the mission of the Prevention, Treatment and eventual Cure of Cerebral Palsy.
What is Reaching for the Stars? What type of advocacy is RFTS involved with?
"Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy." is the only parent-led 501c3 nonprofit pediatric foundation in the world focused on the prevention, treatment and cure of Cerebral Palsy. We have the largest Cerebral Palsy specific Twitter community. The three prongs of our mission are Education, Advocacy and Research. An educated parent is a powerful weapon. Through education we can change the future of Cerebral Palsy!
Our Advocacy efforts are focused on securing federal funding for Cerebral Palsy specific research at the CDC and the NIH. Currently there has never been any dedicated line-item federal funding for Cerebral Palsy at the CDC or the NIH. This is astounding since Cerebral Palsy is the most common motor disability in children affecting over 800,000 Americans and over 17,000,000 people worldwide. You can read more about our Advocacy success here.
I am very proud of the fact that we are the only Cerebral Palsy organization who has successfully secured Congressional language identifying the need for more Cerebral Palsy research federal funding. We have secured language for both the CDC and NIH. You can read specifically about those efforts on our Advocacy page of our website. We were the first to establish an Advocacy initiative called the "Parent/Professional Partnership" with the AACPDM in 2012 realizing that if parents and clinicians partnered together to advocate for CP research funding that we might be more successful.
We are very hopeful that with a re-doubling of our efforts in this Congressional budgeting season, that we will succeed in an actual line item being put into the Appropriations budget for Cerebral Palsy at the CDC and NIH.
Be sure to celebrate National Cerebral Palsy Awareness Day on March 25th, and the entire month of March!