The latest news and information about what's going on with SCI science and research. Brought to you by Sam Maddox, author of the Christopher & Dana Reeve Foundation Paralysis Resource Guide.

Cure Advocacy: It's Not A Miracle


Kate Willette's book has just arrived. It's 238 nicely illustrated pages, titled "Don't Call it A Miracle, The Movement to Cure Spinal Cord Injury." If you want to understand the basic biology of the injured cord, and what the basic approaches scientists are taking to heal, mend or bypass the nervous system, and by all means if you want to know what you as a non-scientist can do to speed things along, get this book. It's free from the Reeve Foundation, which produced it.

Willette is a member of the spinal cord injury club; as is the case with most people who join, her entry was by accident. Not hers, but her husband's. Bruce Hanson sustained a skiing injury, C6, very incomplete. I met Kate and Bruce about 10 years ago, with a film crew at their home outside Seattle. We were there to talk about the role of the spouse as caretaker, and to document Bruce's recent experiences in a clinical trial in Florida, working with physical therapist Andrea Behrman and a body-weight supported treadmill walking protocol, pretty close to what those lucky enough to be in the Reeve NeuroRecovery Network now get. He came back on his feet, using a cane. Nothing miraculous; intense physical therapy can work wonders. 
 
I've run into Willette over the years at annual Working 2 Walk (W2W) meetings – in fact there's one going on right now in Bethesda. Check out Willette's live blog about the science presentations. Of course she can't take us too deep, thrashing away in real time on her laptop, but she brings the scene to life and offers enough science to keep it relevant and enough breezy bon mot commentary to keep it fun. The blog from the 2012 meeting turned into a crowd-funded book ("Working 2 Walk, the Book;" she raised more than $10,000) and took a deeper slice into the material. Now we have "Don't Call it A Miracle."
 
 I asked Willette to retell the inspiration for the book. 
Jennifer Longdon [who has a spinal cord injury] and I were hanging out in the hotel bar after W2W 2013 in Boston . . . feeling frustrated with the reality that progress is still way too slow and people still don't have a good way to make it go faster or even a basic understanding of what they're up against. Together we noodled through some potential ways to fix that.
 
So that conversation led to her reaching out to Peter [Wilderotter, Reeve CEO], who had supported the Kickstarter project and read the book I wrote from it -- which is to say, he was receptive. It took almost a year after that to get a proposal written and accepted.
 
The funding came from the Paralysis Resource Center, because this is an education project.
 
So, in the interest of arming the rest of the club with good information and a more focused, and urgent, approach to cure advocacy, Willette went to work. She never stopped challenging the hopeless words of the doctors who first treated Hanson. Why couldn't he get better? Why couldn't anyone with paralysis get better? She absorbed everything she could about SCI biology and neuroscience. Willette was ready but was her community? The basic purpose of "Don't Call it A Miracle" is not only science education, it's advocacy.
 
"The dream is that this book will become a platform from which we – the Spinal Cord Injury patient group – can launch an organized, coherent and successful effort to drive research. We'll all be working with the same basic set of facts.
 
"In isolation and ignorance, all we can do is wait. But if we're informed, organized, focused, creative and relentless, who knows? At least we have  a shot."

Full disclosure: I read this book in proof last spring; my task was to vet the science part, and Willette did fine, she never went off the tracks. I suggested she might want to drill a little deeper in some areas and to let scientists themselves explain some of the hard parts. To her credit, she ignored my advice, noting that that kind of information already existed; her manuscript is written in her voice for people in her community who need a broad view, not a mini degree in neuroanatomy.
 
Neuroscience is not easy. We try to make sense of it but the detail can't reliably be reduced to cartoons or simple lay reader factoids. I generally assume my readers come to the bargain at least half-armed with some science background. Willette assumes her readers are less than fully armed. That's the fundamental utility of this book; she provides a metaphoric context to glue it together. Simple enough, but I'm not saying it's an easy read – we are talking about taking the edge off molecular detail and tortured pathology. Be prepared to read carefully, and to come back to sections as reference when SCI research stories hit the news. 
 
At its core, Willette's book is optimistic. Says she, "There is every reason to hope and more importantly, there is every reason to work for faster progress toward a cure."

Request your free copy or download the book (PDF).
 
Posted by Sam Maddox on Sep 28, 2015 11:01 PM America/New_York

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