Sunday Morning

This day is going to start with Marilyn Smith (Executive Director of Unite2FightParalysis) doing a little welcome speech. I’m pretty sure she’s going to mention the fact that it’s been 10 years since the first little “Rally for the Cure” back in 2005.

Here she goes.

I want to welcome you to this unique conference — consumer driven, advocate driven together with top notch clinicians from around the world.

The usual housekeeping stuff .  . how to get on the internet w2w15 is the pw for the room. Where to park, how to get validated, how to use the Whova app, Thanks the sponsors and the speakers, especially Kennedy-Krieger Institute, who are also celebrating their 10th anniversary this year. Tomorrow we get to go up to visit their facility in Baltimore . . .

Names the volunteer staff who make this happen: Donna Sullivan, who spends all year trying to set up the agenda & arrange the speakers; Chris Powell, who works side by side with Donna looking at the work being produced in labs and deciding who to bring to the conference; Ginni Kent, Dave Zachs, Harvey Sihota.

More than half the people here today are first-timers. (Wow.) People are here from all over the planet. Marilyn tells them that probably in about two hours they’ll feel like they’re facing a freight train. Hey, shoutout to the blog! Yes, I’m doing this in real time and will be posting throughout the day.

The program is 60 pages long this year and includes a lot of information about current clinical trials . . .

Christopher Reeve passed away in October of 2004 (beautiful image of him up on the screen). If you were part of this club at that time, you remember how bad that sucked. He could say “cure” and “paralysis” in the same sentence in a way that nobody else could. At that time a lot of us were part of a message board called CareCure — and six of us got together to organize a rally on a lawn at the Capitol.

Talk about amateurs! We had no idea what we were doing. About 2 weeks ahead of the thing, someone asked if we had a stage permit. Um, what??? We had no clue what we were doing. And then Tricia Brooks and Michael Manganiello from the Christopher Reeve Foundation stepped in to help, and invited a bunch of people — Dana Reeve, Tom Harkin, Jim Langevin, Hillary Clinton were all there.

The next year (2006) three of us from that original six got together and decided to do it again. And that’s how this started. As I was thinking of this talk, I asked myself what we’ve accomplished . . .

The answer is, not enough.

If Chris Reeve were still with us, I believe he’d be disappointed. And yet if you think about where we were 10 years ago, a lot has changed. My son Noah was injured in 2004, and what we’ve seen since that time is dozens of recovery centers popping up in the USA and around the world. There are 32 in the USA alone, some of which are here today: Core Florida, NeuroWorks (from Utah), Project Walk Atlanta, PhysioAction from Brazil, Pushing Boundaries from Seattle, NeuroKinex from the UK, Push to Walk from New Jersey, and of course Kennedy Krieger.

Of course, exercise recovery isn’t the cure. It does, however, improve outcomes, and it’s going to be a HUGE component when there are drug/surgery interventions. We’re lucky that there are so many of these organizations, because we’re going to need them.

When I look at the 2006 program, there were zero clinical (i.e., human) trials. All experiments were on rats and mice. This year we’re going to hear about lots of them. We’re seeing more therapies being applied for chronics — 10 years ago everything was aimed at acute injuries.

Video coming up . . . it’s a photo montage from the last 10 years. I recognize so many of these people, as would anybody who’s been part of this deal.

Hopefully when we gather 10 years from now, you’ll all be walking through the door and this conference will be obsolete. (clapping)

I have a little granddaughter who’s a year or so old, and some of her first words have been MORE and FASTER . . . let’s follow that lead.

She’s introducing a panel that includes me. Back soon.


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