Why We Fight

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.

Okay.

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.

 

 

 

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