Michael and Rachel

Okay!  Afternoon in the ballroom . . . we start with Marilyn Smith introducing Rachel Hammerman and Michael Mangienello, both of whom have helped out with this event again and again over the last 4 years.  Rachel goes first; she’s saying that every one of us has a set of handouts for our legislators.  There’s a set for us and a set for each person we meet with.

Our asks: Pass the CDRPA, increase funding for research at the NIH, make insurance companies, Medicare, Medicaid to fund  adaptive equipment for use in homes and private rehab centers.

Michael’s turn:  “This is my favorite weekend of the year, when you guys come.”  He met Dana when they were 25 years old, waiting table in New York.  The Reeves weren’t fancy Hollywood folk, they were just actors who lived on the east coast and their lives were in chaos.  Michael says he was petrified walking into Chris’s room.  “This was a guy I had played tennis with . . . ”  Very soon he realized that Chris was still Chris.  Chris didn’t want anything — not his name on a building, not recognition, nothing.  He just wanted to get out of his chair.

For the rest of the world, SCI was just not on anybody’s agenda.  That changed after Chris’s injury.  For the longest time they didn’t actually ask for anything specific about SCI.  He did meet with the Clintons and managed to get $10 million, which was better than nothing.  Dana was the person who decided that quality of life was just as important to people with SCI as the research.  He and Dana used to sit in the back yard going through a series of  QOL applications, having a little wine and weeping over the ones that involved children.

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Lunch!

Iced tea, ice water, some kind of chicken thing with mushroom sauce.  Salad with uber tangy dressing, cheesecake . . .

At 1 pm Sue Maus gets on the stage in her powerchair to say thanks and introduce the advocacy speakers.  The first one is Donna Sullivan, (known to CC users as IMHopeful).  She’s a complete star.  Talking about how Chris Reeve’s appearance on Larry King LIve was her first introduction to sci . . . like so many people, she was shocked at how tough and complicated this monster is.  Talking about her son’s injury nearly 3 years ago.  They flew on a small jet with 3 EMT’s to a critical care facility at Ohio state, his head on her lap the whole way.  Tells about the moment that he –hooked up to all the tubes –asked for a computer.  Why?

He wanted to pay his bills.  Happy moment!

Donna programmed the phone numbers of her legislators into her cell phone and called them regularly until they came along and agreed to co-sponsor CDRPA — a process that took many months.  I say again, she’s a rock star.

Next is me.  I’m nervous as hell, but I manage to tell a story that illustrates something I firmly believe: that we all know how to advocate because we had to do so much of it in the hospital.

Then comes a man named David Zacks whose family sat at my table–pretty wife, 7 and 5-year-old daughters, and 3 year old son.  The 2nd grader gets up on the stage with her dad to turn the pages of his talk for him.  He says that like all of us, he was told that this injury is permanent and there is no reason to do anything but get used to the situation and make the most of what you have.  (Inside, I’m hearing the room go hisssssss, but we’re quiet and respectful.)  The little girl makes a face when her dad tells how her sister sometimes introduces him by saying, “This is my dad!  He pees in a bag!”  David’s wife is next to me videotaping this.  His parents are across the table holding the younger children.  David says that for him the cure means being able to hold a beer in his hand . .  . being able to hold his child’s foot tight with one hand while he tickles him with the other.  Ah, there is loss everywhere, everywhere in this room.

The last speaker is Joseph Briseno, a man who was here two years ago, the father of an injured soldier–in fact, the father of the Iraq war vet who has survived the worst set of injuries of any soldier living.  He has a beautiful, warm voice, a Spanish accent, and so much quiet passion.  His son is blind, on a vent, fed with a stomach tube, has a C3 injury and a TBI.  Jesus, God.  The family has been taking care of him themselves for 5 years.  Photos of his family are up on the screen; beautiful daughters with big smiles and the son who is so clearly loved. He makes me ashamed to have ever complained about anything in my life.

He ends by saying that yesterday is a mystery, tomorrow is a mystery, today is a gift.

We’re silent, and then we clap.

Next up is — from Alseres Pharmaceuticals, Dr Mark Hurtt, the Chief Medical Officer to talk about Cethrin

Breakout 1: Wise Young

Gahh, my laptop just had a meltdown, so I’ve been frantically trying to fix it and simultaneously take notes.

Wise has been doing the quick rundown about what an injury to the cord means, physiologically.  If I had to miss something, I guess this part would have been my first choice . . . it’s the standard information. He’s explaining how it is that things pass through damaged cords. . .  talking about reflexes . . . he says that Chris Reeve’s reflexes were so strong that if you gave him a hug, his spacticity would toss his 250# body right out of the chair.

He says that people should stop thinking about axons as if they were wires . . . they’re not.  They’re living body parts, like arms.  And when we talk about regenerating them, we’re talking about re-growing body parts.

It takes a long time to grow an axon–as long as a year for a quad to get an axon all the way down the cord.

Spasms are the result of messages from above that get mixed up trying to get through the dead part of the spine.  Neuropathic pain is the result of messages from below that get mixed up trying to get through the dead part.

Putting in stem cells and expecting people to walk is never going to work, because 3 things are necessary for regeneration.

The first one is to replace the damaged injury site with something that is hospitable to axonal growth, but not so hospitable that the axons enjoy the environment so much that they just stay there.  What we need is something just friendly enough to be a bridge.  Hello, nice to see you, move along.

The second one is to have something that is a sustained source of growth factors that will stimulate the system to grow and keep growing.

The third one is to find a way to deal with the things natural to the cord that inhibit growth–the blockers.

In order to get regeneration, we need all 3: a bridge, a source of growth factors, and blockers.

The process of figuring out how to make this work in humans is about combination therapies.