This fall the North American Spinal Cord Injury Consortium will hold its first meeting in hopes of establishing a unified voice regarding ongoing issues within the spinal cord injury community.
NASCIC was founded by 15 prominent spinal cord injury organizations in the U.S. and Canada — including The United Spinal Association Research Committee, the Canadian and American Spinal Research Organization and the Rick Hansen Institute — with the goal of providing a platform for shared goals within the community.
“We’re trying to bring together the stakeholder organizations that represent the voice of people with spinal cord injury, their caregivers, and we really see this as an opportunity to amplify their voices and pull them together around shared values, shared projects and shared concerns,” says Megan Moynahan, executive director of the Institute for Functional Restoration, one of the founding member organizations.
The consortium was organized by Kim Anderson-Erisman, director of education for The Miami Project to Cure Paralysis, and Jennifer French, executive director of the Neurotech Network, a non-profit dedicated to neurotechnology, following Praxis Conference, a SCI research conference hosted by the Rick Hansen Institute in Vancouver, British Columbia, in April 2016. It was modeled after the European SCI Federation, which is made up of several individual member organizations run by people with spinal cord injuries and is focused on changing clinical care for spinal cord injury in Europe.
The plan for the consortium is to meet on at least an annual basis to put aside their individual organizational agendas in favor of working on projects in the collective interest of the SCI community. First, connecting the SCI community to clinical trials and other ongoing research, before moving on to other projects including cure versus care, independent living and employment, to name a few.
The first meeting will be held October 12, 2017 at the Miami Airport Hilton in Miami, Florida, and will focus on setting up governance and membership structures as well as beginning to identify potential projects.
“We’re very concerned about having a very democratic process,” says Matthew Roderick, executive director of Unite 2 Fight Paralysis. “In other words, one organization, one individual, one vote and not a structure that would be based on the size of an organization or the size of an organization’s annual budget or even its reach. It will remain to be seen how the day comes together, but I would love to see a number of projects identified that the consortium can begin to work on.”