Talking cure, taking action: a partnership perspective from CSRO

For more than a decade the discussion about a potential cure, or cures, for spinal cord injury has inspired and deflated hopes, created advocates and dissenters. No longer considered an “unachievable endeavour or hope” a cure is in sight today although efforts are still not supported collectively and lack consistent leadership. But there’s a strong movement in the SCI community to change that attitude and landscape while securing funding for cure-focused research.

“We must get back to basics, addressing the perspectives of those living with SCI. That means identifying what a cure for spinal cord injury really means,” says Barry Munro, Chief Development Officer for ONF and the Chair of the Canadian Spinal Research Organization. “We need to educate people about the research underway and the potential it offers to restore the vital functions that are impaired by SCI.”

One such flagship movement for education and advocacy is led by Unite2Fight Paralysis an organization of and for those with SCI that has been around since 2005. Calling itself the “voice of the cure” Unite2Fight is making the case for a cure loud and clear.

Among its many programs and activities the US-based organization addresses SCI issues head-on at its annual meetings at the Work2Walk Conference. Conference participants include leading researchers, clinicians and those living with SCI. In its initial years this conference emphasized education but in October 2016 the spotlight was on grassroots advocacy and every attendee, Barry included, was challenged to identify and commit to be involved.

Talking about a cure for SCI is definitely out of the closet as far as CSRO and Munro are concerned. And now is the time for action to make the possible a reality. “We will be taking a more direct approach in our efforts to raise the profile and speak to the achievements of cure research initiatives in the context of restoring critical functions,” he says.

“We want CRSO to be the go-to Canadian organization supporting and encouraging cure advocates in Canada,” he says. CSRO will launch a webinar series of short videos this spring each focusing on a cure-related research direction, project or possibility. Building momentum for the investment in cure research has also changed the research funding model. “There is a shift to Letters of Intent and a peer review awards process and follow-up much like the models used by government and pharmaceutical companies to fund research projects.”

And there are many others contributing to the conversation and providing support for advocacy efforts, says Barry. He points to the frank book “Don’t Call it a Miracle” by author Kate Willette. She says the SCI cure isn’t a miracle but represents effort and commitment to advocacy – a movement – by those with SCI and anyone who cares for and about them. Willette uses the example of the AIDS cure campaign that turned a killer virus into a chronic illness. (Don’t Call It a Miracle can be downloaded free of charge here.)

“Willette’s book is a reminder to all of us about the progress that has been made towards a cure and the promise of what is possible in the next few years,” says Barry. content