The History of Cerebral Palsy Research Advocacy in the United States
Funding for cerebral palsy research in the United States has long been underfunded despite the number of Americans impacted. In fact, until 2004 there were no organized community-based advocacy efforts focused on increasing federal cerebral palsy research investment. Beginning in 2005, two mothers of children with cerebral palsy, Cynthia Frisina & Anne Marie Champion organized to focus on this issue - frustrated at the lack of research funding and absence of stakeholder representation in public health funding decisions for cerebral palsy. Together, they formed a volunteer cerebral palsy nonprofit organization named Reaching for the Stars and headed to Washington and across the US to create change.
For the past 16 years, Cynthia Frisina, now Sr VP of the Cerebral Palsy Foundation, along with others, have led advocacy efforts, crafted bill language and spearheaded national stakeholder/provider collaboration for increased US federal research investment.
In 2006, we created National Cerebral Palsy Awareness Day (March 25th) with the support of Senator Johnny Isakson (GA) and Senator Robert Casey (PA) to bring attention to the fact there was no dedicated federal research funding for cerebral palsy, despite CP being the most common lifelong motor disability. The color green was chosen to represent the day since it followed St. Patrick’s Day.
In 2014, we created the idea of expanding National Cerebral Palsy Awareness Day to include a green ribbon, and t-shirt, lighting up buildings green across the US, and establishing the hashtag #GoGreen4CP. The movement began spreading like wildfire. People across America embraced the idea and began engaging communities to participate in a variety of ways.
Also in 2014 we provided Public Witness Testimony in partnership with Dr. Lisa Thornton of the American Academy for Cerebral Palsy & Developmental Medicine https://docs.house.gov/meetings/AP/AP07/20140325/101877/HHRG-113-AP07-Wstate-FrisinaC-20140325.pdf and drafted Labor, Health & Human Services Appropriations (LHHS) language calling for dedicated cerebral palsy funding and the creation of a five- year US Cerebral Palsy Strategic Plan. This also led to the creation of the CP Collaborative in 2014, bringing the US community and professional cerebral palsy organizations together to further support these advocacy efforts.
Reaching for the Stars merged with the Cerebral Palsy Foundation 2019 to create an even greater year round advocacy impact and growing awareness of National Cerebral Palsy Awareness Day and month.