Forgot to Say

The conference is of course the result of effort that goes on for many, many months. The people who organize it at u2fp are mostly volunteers; there are only 1 or 2 paid staff there, and I use the word “paid” very loosely. We’re talking fraction-of-the-poverty-level paid. So please thank them. I thank them! You guys did it again, and it was just so good to have everybody roll into our city.

The other thing I have to mention is my friends at Pushing Boundaries, who spend each and every day helping paralyzed people work whatever muscles they have working (and some they didn’t know about!). It’s another nonprofit, another labor of pure love. If you haven’t checked out their gym in Redmond, for heaven’s sake do it. You’ll be glad you did.

Special shout out to Barry Long, whose voice and presence and humor and intelligence really set the tone for what otherwise might have seemed like an overwhelming & difficult day. He has an incredible gift and I’m just so glad that he said yes when he was asked to take the stage. I’ve never seen it done better. Barry, you rock.

Advertisements

The Paralyzed Bride

Rachelle Friedman Chapman

I was paralyzed 4.5 years ago at my bachelorette party. A friend playfully pushed me into the pool. I fell weird and hit my head. c6 quad.

Talking about how much she loved the movie, Murder Ball. In college she helped people with adaptive sports as a volunteer . . .

Sometimes looks around and goes, this is crazy. The news media got hold of my story when I was about 6 months post. Yeah, my best friend. Yeah, my wedding only 4 weeks away.

One interviewer asked me how much of it is attitude . . . and I said all of it. But that became a thing because people take it to mean that if you only try hard enough you can do it. That’s not true, as everybody knows. People don’t want to hear about the bad stuff, right? I don’t think I’ve had a good morning in 4.5 years. I have very severe neuropathic pain, sometimes so bad that I wake up in tears.

Everything takes forever. Getting dressed, going to the bathroom. I need my mom to help with my bowel program. I have to have people help me get the bag out of my pants. When I go on tv, every single time I talk about science, about the need for a cure, and every single time they cut it. Every time.

I started writing a blog because of that. More than equality, we want a cure. We want equality, sure. But more than that we want to get well. People actually ask me if I’d change this if I could.

WHAT??

Yes. And you know what else? I don’t think everything happens for a reason. I don’t want to be an inspiration. I want people to see that I’m a person, sure, and I want people to understand that they could be me, and that this can happen to everybody.

I used to teach line dancing at senior centers, and now I have more in common with 80 year old people than I do with people my age.

Once I did a panel with people who were against stem cell research, and this guy who was against it admitted that he’d be in favor if it was his own daughter were injured.

We need to be louder than the people who say this is okay.

Amen, sista.


Ida Fox and Amy Moore

This talk is called Advances in Peripheral Nerve Surgery and Applicability to SCI

These doctors work with actual patients.

Amy Moore is first.

It’s very inspirational to be here and learn what’s going on from a central nervous system perspective. (Holy smokes, she looks like a movie star.) She does peripheral nerve surgery, and she thinks there is a way for this to have impact on sci recovery. Your axons have their cell bodies in the cord, and they grow out of it all the way to its target muscle.

Axons grow at the rate of 1 mm per day, which = an inch a month. The problem is that by the time the axon gets to the muscle it’s too late. So what do they do with the nerve graft? You start with a gap in the tube of axons, and you need a conduit through which they can grow. One issue is that physical conduits degrade. They have a thing called an Acellularized Allograft, which comes from a cadaver. Oh, cool.

They do work. About 5 times as well as the conduits, in terms of how many axons get through. It works great for 2 cm, still good at 4 cm, but not so good at 7 or 8. What’s going on? Well, Schwann cells get stressed and become inert. They don’t produce the growth factors you need to get the axons to keep going. Basically, the Schwann cells aren’t able to do their jobs.

The gold standard, she says, would be an allograft, but they have not been able to get there. What they’re doing while they work this one out is called Nerve Transfer. (We heard about this at Working2Walk 2012 . . . link is here.) It involves taking a nerve that’s not really needed from somewhere in the body and using it to repair a damaged one. They’ve used this a lot for people who injure their shoulders in motorcycle crashes . . .

Is there a way to speed up recovery in nerves that are slowly re-growing? Yeah, they do a graft in the same way during the re-growing time. She has a patient with a damaged ulnar nerve, which causes 40% of what your hand can do. A hand with an ulnar nerve deficit looks a lot like a quad hand. The patient’s nerve was growing, but it was probably going to be too slow . . . so she did the surgery that re-wired the girl’s nerve.

And there’s a video up with this girl’s two hands both working perfectly.


Why Are We Here?

If you’re a scientist, you want to share what you’re working on and you want to talk with others in your field.

If you’re a biotech investor, you might be looking for a therapy that’s going to bring a return.

If you’re a clinician, you’re looking for new things you might use to help your clients.

If you’re paralyzed, you’re here to find out what there is to help you.

People travel thousands of miles, cross oceans, put their health at risk to be here. We have people here from Japan, Australia, Europe, the UK, Canada, as well as every part of the USA.

This conference is a place to be honest. No need to put on a public face. You can share thoughts, feelings, desires, in a very open and honest way. It’s really important to the cure effort to ask each other the hard questions. If you hear that people are recovering bowel, bladder, what does that mean? Is it no more cathing? Is it sensation? Ask those kinds of questions.

If you’re a scientist, ask the people in chairs what’s important to them.

Recently I came across a couple of articles where people spoke publicly about what’s important to them.

Quoting Dan Griffin (from Reeve Foundation): SCI robs me of time. The fact is that paralysis alone will not kill me.

Rachelle Friedman: I’ve been determined to show that we can be happy, but what if doing that diminishes the urgency for a cure? (Rachelle is going to speak here tomorrow.)

So . . . tell the truth here.

Showing a video where people talk plainly about paralysis. “A Conversation about Paralysis” — they have it up on the screens. Very straight up stuff, no effort to hide the reality of this. OH! The credits are up and it was made by Matthew Rodreick, who is a crazy awesome guy & board member of u2fp.

I’ll find a link to this and get it to you . . . it’s 4 or 5 people talking about their injuries, their disabilities.


Marilyn

It’s 9:02 so we gotta get started! Full agenda, no time to slack.

Never know when you go to a new city if people will come out, but this turnout is amazing. Thanks Pushing Boundaries for their help in getting to a record number of registrations.

Last minute schedule changes are in the insert . . . okay, okay.

u2fp is jumping into social media with both feet. We got twitter experts here, so go trend it up. There will be people all over the world chiming in.

Talking about garage parking vouchers, lunch menu, reception, etc.

We have a terrific group of speakers this year. Busy people carving time to come here is so important . . . but there’s value for them as well to come here and be among people in chairs. The speakers will mostly give a general session presentation, then do some Q and A, then later some breakout sessions where you can ask more questions in an informal setting. This group of speakers is some of the most elite scientists, movers and shakers in the field.

Event supporters . . . we’ve always made this event accessible and available to anybody who wants to be here, and that’s thanks to the people who write checks to make the conference happen. Let’s thank Pushing Boundaries again . . . cheers!

Recognizing u2fp staff for showing up to make this all work, especially Donna Sullivan and Chris Powell, who spend most of their time learning what’s real in research and putting together the science agenda.

Okay, so . . . why are we are?


Two More Days!

Until we’re hanging out together. Woot!

535527_10151530820957846_43077591_n