A great story about some ordinary people who believed they could make something good happen . . . and then did.
My project is a book about that conference, specifically about the one that just took place (November, 2012) in Irvine, California, organized in collaboration with the Reeve-Irvine Research Center. One of the things that’s become clear over the years is that it really is possible to help regular people become strong, informed advocates for a cure.
It’s hard to advocate for this kind of research because funds are limited, because the rules that govern human clinical trials are convoluted, because the spinal cord resists repair in a dozen different ways, because some of the necessary molecular science is still poorly understood, because there are people who waste time hyping undocumented cures, and because researchers often compete with one another instead of cooperating. Working2Walk is all about taking on those challenges. It’s about engaging with the research community instead of waiting for them. It’s about becoming part of the solution.
My book will showcase the power of advocacy and allow people to see how they can be part of it. Just like the Working2Walk conference itself, the book will highlight the best new science in clear, accessible language; there’s plenty to be excited about from labs and clinics around the planet. And, just like the conference, the book will be full of powerful examples of people from the community who decided to work toward making the cure come faster.
I want to make a book because there are so many people who can’t or won’t take the time to read through a lot of internet pages or watch a series of videos. For a lot of us, a book is still the best way to get information. A book is tangible evidence that someone cared enough to make a permanent, serious record. I want this book to be in the hands of people who staff rehab centers, hospitals, and trauma facilities. I want it to be in the hands of people like me. When my husband broke his neck in the spring of 2001, there was no international science/advocacy organization. There was no reliable one-stop shop to give us guidance about who to trust. There was no single well-educated, well-informed source to tell us the real story about progress in research, which was the very thing we most wanted to understand. It’s my conviction that the more educated, informed, and connected our community is, the more effective all of us will be in making the cure happen faster. The book would be just one more way to crank things up to a higher gear.
If you’re able to help out, THANK YOU. If not, please pass the word along to everybody you know. The clock is ticking!