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 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, one of those mothers (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, this same team 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, they 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, these parent advocates 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.
It was during this time that it became clear that the cerebral palsy organizations needed to band together to create a unified voice to support these efforts which led to the creation of the Cerebral Palsy Collaborative in 2014. The concept of the Cerebral Palsy Collaborative, originated during the 2014 NIH State-of-Science and Treatment Decisions in Cerebral Palsy workshop. At the time it was clear that the NIH, the CDC and the general public were in need of a unified voice from the cerebral palsy community for research, advocacy, education (dissemination of information to those with cerebral palsy and those who care for them) and awareness. Given that there are multiple cerebral palsy related organizations with diverse strengths, it made sense to bring them together for common goals and especially to support the advocacy efforts that were underway. The idea formalized into a working group, led by Jennifer Lyman, at the 2015 AACPDM meeting in Austin, when the charter members agreed to hold regular calls focused on areas of common interest, including research, advocacy and awareness, and education with the primary effort to be in support of the Appropriations language.
Since the creation of the Cerebral Palsy Collaborative, there has been reorganization amongst the several of cerebral palsy non-profits including the merger of 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. The Cerebral Palsy Collaborative has continuously supported ongoing legislative efforts led by CPF and in 2020 and 2021 have resulted in the strongest Congressional focus on cerebral palsy research funding in history and is leading to the second National Cerebral Palsy Strategic Planning Workshop to be held in 2022 at the National Institutes of Health. Read more about it here https://www.gogreen4cp.org/learn-more