Posted tagged ‘Marilyn Smith’

Let’s Review: Part One

November 15, 2012

I’m writing this from my desk at our house near Seattle . . . everyone who came to Working2Walk is by now long since home and settled back into whatever routines normally fill their days.  As I look over the posts on this blog, it occurs to me that there are a couple of things left to do.  One is to say thanks again to the people who worked all year to bring this thing into being, mostly as volunteers, one or two as very poorly compensated staff.  We owe them.

Another is to sift through all this information and highlight a few places that stand out for follow up and further review.  Your list might be different from mine on that score, and I’d be love to hear about it if that’s the case.  So, starting from the beginning . . .

1. Marilyn Smith’s words from her opening remarksWe have three tools. EDUCATE, ORGANIZE, and TAKE ACTION.  As those with the most skin in the game, we need to invest ourselves in the process.  The most powerful force we have going for us, though, is BELIEF.  We want you to leave this conference with belief in the power of science, knowledge, and advocacy.

2. Dr. Os Steward’s excitement about his CTRP team’s success in finding a specific gene — called PTEN — that blocks regeneration of nerves.  When someone with his reputation for calm and caution and meticulous communication shows enthusiasm, it’s definitely catching.  I’ve gone back and put some links into that post so you can read the background material yourself if you’re interested.

3. Dr. Murray Blackmore’s sheer cleverness, determination, and most especially, youth.  I’ve heard for a long time now that SCI research used to be considered a big fat dead end to any serious career.  “You’ll waste your life trying to solve that!  Focus on something that’s actually achievable!”  That was once common advice.  And here was this sharp new mind attacking the problems with impressive ingenuity and determination.  I especially liked the part where he said that he went data-mining in cancer research about transcription factors and quickly discovered that there are 210 of them that seem to have a role in cancer growth.  When he cross-checked that list of 210 with the 12 that he knew were involved with axon growth, 11 out of 12 were on the list.  As he told us, “That means the other 199 suddenly become very interesting . . . ”  In his talk, Blackmore described his just-published research that shows transcription factors can make old neurons think they’re young and still able to regenerate, so this matters.

4. Oy.  This is going to be a long list, I can see that.  I’ll put this up as part one and keep working on the rest.

Why We Fight

November 1, 2012

Why we fight is the name of the talk that u2fp Executive Director Marilyn Smith is about to give, as soon as people are settled and the audio-visual-tech guys have all systems running.

Wow, 8 am turns out to be EARLY.  Just sayin’.

The scene right now: big carpeted ballroom, not too offensive low lighting, people getting fruit and bagels and coffee, scientists (they’re the ones in dark suits) and advocates, many of them in chairs, mostly not wearing suits. 🙂  I myself went for the jeans and tee-shirt option; this is California, after all.

The program this morning is focused on genetic therapies, and the first speaker after Marilyn will be Dr. Os Steward, who runs the Reeve-Irvine Research Center.  (You can see the whole agenda here.)

Lights down, music up, here we go!

I want to thank you all for coming; I know it was a long journey & we’re especially sad that so many people from the east coast couldn’t get away . . . next year we’ll be in Boston, so hopefully they’ll all see us then.

Thanks the many sponsors of this event, along with the speakers who take time out to show up and share what they’re doing.  Talk to them!  There’s a huge beneficial exchange of knowledge that always happens here.  Take advantage of it!  Thanks the staff, the people behind the scenes who make this all work, mostly volunteers.  Thanks the Reeve Irvine Research Center people who have also volunteered lots of time to us.  Thanks Succinct Productions for making our new video.  BIG thanks to Chris Powell and Donna Sullivan, her partners in pulling this together.

Recognizes people from Europe and from the Japan Spinal Cord Foundation, and from Nepal, and from Australia, all terrific advocates and all SO welcome here.


So why u2fp?  Why 6 people who met on the internet deciding to organize a WA DC rally?  Why did a couple of them decide after that to found u2fp?  Today is 7 years to the day since that beginning.  

For the people here, for the people in chairs, the people who support them, the researchers . . . for the people who aren’t here this year, the first time they’ve had to miss the conference (photos of David and Sue on the screen . . .blub).

Reading from a letter:  I’ve attended w2w twice now, and I can’t begin to tell you what a difference it made to me.  I told my sister that I hoped before I die I would see my baby boy walk again.  Unfortunately it didn’t work out that way. Sepsis, fever of 108, irreversible brain damage. . . we fight so that people will not have to endure what we did.  

As everybody knows, in spite of the name of the conference, it’s not just about the walking.  She’s asking how long it takes for people to get up and out the door in the morning . . . 15 minutes?  30?  an hour?  two hours?

Lots of people do of course figure out how to live well, even with paralysis.  They even make it look easy.  It’s not.

We’re here to fix it.  We have three tools. EDUCATE, ORGANIZE, and TAKE ACTION.  As those with the most skin in the game, we need to invest ourselves in the process.  The most powerful force we have going for us, though, is BELIEF.  We want you to leave this conference with belief in the power of science, knowledge, and advocacy.

She’s talking about Bob Yant . . . who has spent 30+ years living with SCI.  He’s educated himself about science, like a human encyclopedia.  He’s raised over $10 million to support that research.  He’s going to introduce our morning speakers.

Yant rolls up to the podium in his power chair.  Marilyn sits.

Yant:  Thank you for the very kind introduction and the wonderful passionate words . . . it’s so important to keep passion alive.  I want to give you a brief bio of Os Steward . . . gives his academic creds, then 1999 to now director of RIRC.

Woot!  Here he is.