About That Agenda


Here’s what the plan looks like for us visual learners. The blue boxes are all eating/visiting/resting opportunities. There are lots of them on purpose, partly because we can only take in so much information before we need a break and partly because one oSlide1f the reasons for the conference is to connect with one another. If you’re an introvert like me, suck it up. This is important.

The green boxes are science presentations. Some of them will be grueling. All of them will involve powerpoint. If you want to get prepared a little & have the time, go look at the u2fp website where the subject matter is described. Know that there will be the blog almost right away for reference and then (a bit later) video online of every one of these talks, so you don’t need to try to capture what’s said in your own notes unless you want to. The main thing here is to follow along and get your questions together for the breakouts and panels. For those playing along at home, feel free to use the comments box (or twitter) after I post what’s been said to ask your own questions. I’ll try my best to see that they get asked on behalf of us all.

The breakouts are the gray boxes. Super opportunity to be with the scientists, and — just as important — for them to be with you. They all say the same thing after presenting at this conference: meeting with people in chairs motivates them more than anything else. Don’t waste that chance.

That one orange box is for a presentation that will outline the kinds of things that people in chairs can do right now, both to stay healthy and to prepare for the therapies that are coming. Both of the breakouts that follow it will address specific issues from that perspective. How can we push ourselves? How can we push scientists? How can we push insurance companies? How can we push the government to fund more, faster, better?

The golden bars are golden. This will be advocates talking to you. Some of them are in chairs, some have loved ones in chairs. They’re us.


Never Heard of This Conference?

Here’s the history. When Christopher Reeve died (almost exactly 10 years ago), a small group of people who were active at CareCure Community at the time decided to hold a rally in Washington DC. All they really wanted to do was express their sorrow, meet one another, maybe do some gimp drinking, and try to figure out how to keep the idea of a cure from dying.

See, Christopher Reeve was at that point the loudest and proudest advocate for more science. Scientists who knew him will tell you that he was always on them to hurry the hell up. The CareCure people — and lots of others — were worried that without him everything would grind to a halt.

And God knows it was already going oh-so-slow.

Anyway, they had their rally & decided to invent a new thing. They imagined a sort of scientific conference + fun party + advocacy training. They would keep it super cheap. They would find the scientists doing the most interesting work and invite them to give presentations to the people in wheelchairs. They would nurture a core group of activists who would be informed and motivated. And they would have a good time. That group named itself Unite 2 Fight Paralysis.

So, that’s what happened. I started writing a live report of the goings-on in 2007 and have done that every year since. There’s a list of links to all those reports (blogs) over on the right side of this page.

So, there you go. Welcome to the party.

Six Days Out

It’s Saturday, October 11th, which seems impossible because we just had the middle of September. What? The conference is almost upon us, and here’s what I need to do to get ready for you all.

First, who’s going to be speaking. Can I find images of them? Links to their work? Can I figure out why people should care about their work? Set up some pages so I can publish faster when the conference is actually happening . . .

Actually, that’s not what I’m doing. That would be what an organized, focused person spent her time on, six days out.

What I’m spending my time on now is — this year — special. Because I’m writing a new book, and my new book is going to be a sort of gonzo version of everything I think advocates need to know.

Gonzo journalism is a style of journalism that is written without claims of objectivity, often including the reporter as part of the story via a first-person narrative.

Yup, that. I’m writing a book about spinal cord injury research that is both accurate in the reporting sense and personal in the sense that, you know, spinal cord injury is about as personal as you can get, whether it happens to you or to somebody you love.

It happened to somebody I love, for the record.