Cure advocacy: It's not a miracle

Posted by Sam Maddox in Research News on September 30, 2015 # Advocacy and Policy

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.

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 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 taking 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).

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.