​Getting to a Cure Faster: How Paralysis Community Action Can Accelerate Research

Posted by Reeve Staff in Daily Dose on April 16, 2021 # Reeve Summit

Getting to a Cure Faster: How Paralysis Community Action Can Accelerate Research

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A lot of people in the paralysis community are sick and tired of hearing about a cure “just around the corner.” Murray Blackmore is one of them. He’s also one of the ones who’s been saying it. As the head of a Marquette University laboratory focused on axonal regeneration, one of the most challenging barriers to spinal cord injury recovery, he is still convinced that a solution is possible. The paralysis community, he says, is the lynchpin.

Given what we now know, what will it take to bring the next generation of treatments to bear on the quest to cure paralysis? Blackmore, an associate professor in Marquette’s Biomedical Sciences department, will tackle the subject in a live workshop at the upcoming Reeve Summit 2021 (April 27-29, 2021). “Spinal Cord Injury Research: What’s on the Horizon, and How Can We Get There Faster?” webcasts April 29 at 4-5 p.m. EDT.

Perspective of a Scientist and Son Whose Mother Lived with Paralysis

Blackmore is a scientist on the front lines of spinal cord injury research, but he has also been on the other side, as a family member of someone living with paralysis. His mother was paralyzed from the neck down after a cervical injury in the 1980s. As such, Blackmore contributes both the curiosity of a scientist and the impatience of a family member of an individual with a cervical injury.

“We’ve been five years away from a cure for decades, really,” Blackmore says. We’ve made progress at a high level in each of the different pieces of the puzzle. What’s needed now, he says, is to put all the pieces together.

Paralysis Community Involvement Key to Accelerating Research

“The problem is that it’s complicated,” he says wryly. “Because it’s complicated, with lots of problems to be solved at the same time, it requires a team effort. It’s not so much how people are working together but if they’re working together.”

Blackmore is adamant that the team effort includes all stakeholders. That means scientists, clinicians, funders, venture capitalists and possibly industry as well -- the whole pipeline from research and clinical trial to commercialization. Critically, it also means community members living with paralysis. “People with lived experience with spinal cord injury need to be at the table from the start,” he says. “This is to keep the whole thing from running off the rails, to make sure that whatever is being planned is actually in alignment with what people with spinal cord injury want.”

Bringing Lived Experience with Paralysis to the Research Planning Table

Blackmore is so convinced that this is the best way forward that he and a few other labs are piloting a new program that does just that. It brings an individual living with paralysis into lab meetings at every level to be a part of the research discussion. The idea is to keep scientists grounded in reality through the first-hand, up-close perspective of someone living with a spinal cord injury.

“I’m trying to convince everyone in my field that every lab should have this,” Blackmore says. “Really, if you don’t have someone advising you on how to keep your science directed toward what is meaningful to the people you’re trying to help, then you’re not doing it right.”

In the Reeve Summit workshop, Blackmore will describe the initiative as well as other ways that community members can help accelerate research and discovery. He will also offer a view toward “next-generation” therapies and why they’re taking so long.

Second Annual Reeve Summit April 27-29 Features 40+ Virtual Sessions on Paralysis Topics

The second annual Reeve Summit: Where Care, Cure and Community Connect takes place April 27-29, 2021. “Spinal Cord Injury Research: What’s on the Horizon, and How Can We Get There Faster?” (April 29 at 4-5 p.m. EDT) is one of more than 40 virtual sessions. The summit will explore topics relevant to the paralysis community, including advocacy, caregiving, employment, research, and health and wellness. Participants around the globe will have a chance to hear from experts, ask questions, and share their own experiences of living with paralysis.

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This project was supported, in part, by grant number 90PRRC0002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.