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Archive for the ‘Cethrin’ Category

Congressional Briefing

Posted by katewillette on April 15, 2008

Here’s what it’s like . . . you reserve a room in one of the office buildings near the capitol.  You make sure there’s coffee and tea plus the usual tray of cut-up fruit – maybe some muffins or sliced bagels.  Neat rows of bottled water and juice.

Your presenters show up with their laptops, wearing dark suits and ties, carrying their notes in their pockets.  (Dark suits and ties– or heels, for those of us who are not male –are required attire here.  It’s very obvious who the regulars are in any room.)  You hope for some congressional aides and maybe even the press.  We have 6 scientists here this morning, plus several people in chairs and more than a dozen activists.

We start on time, more or less, although there are almost no guests from the congress or the media.  Possibly the problem is that this is the day the pope is in town . . . possibly we’re too early in the day . . . possibly –as usual—there are too many other priorities.

Wise Young gets up to introduce the session and name the speakers . . . he’s talking as if there were a crowd of aides here.  First to speak is Dr. Pearse from the Miami Project; he explains what MP is – an organization devoted to curing spinal cord injury.  He’s just said this is a very good time to be working in this field because there are so many extremely promising therapies.  The issue, he says, is that we need funding to bring the research forward . . . many young scientists are considering leaving not just sci research but science itself because they can’t do their work.

Stephen Davies gets up to tell us about two new and exciting therapies.  He’s showing his slide that has the axons straggling toward the injury site and being stopped by a scar.  His strategy is twofold – to get rid of the scar and to encourage the axons to grow past it.  His lab has discovered that there’s a substance called Decorin that breaks down the scar tissue in an injured cord.  What about the business of getting axons to grow?  An NIH-funded group from the University of Rochester isolated a type of cell called a glial-restricted precursor that can be coaxed into forming another cell called an astrocyte.  The combination of astrocytes and Decorin is an extremely promising therapy, and Dr. Davies wants very much to bring it clinical trials, hopefully (since he’s an academic and not a businessman) through the NIH.

Less than 10% of SCI grant requests are being funded.  The breakthrough that Dr. Davies achieved with his astrocyte cells was originally funded by the NIH . . . but it’s likely that under current conditions his application would not have been funded.  We must assume that there are plenty of grant applications currently sitting in drawers, unfunded.  This is science that could be done but isn’t.

Dr. Simon Archibald gets up to say that we’re NOT looking now for the way to restore function through therapies, because we have therapies that have been shown to work –but instead how to choose the best combination of those therapies.  We’re at a critical point, where the process of getting from labs to patients is finally underway.  It must be funded.

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Posted in Cethrin, NIH, paralysis, spinal cord injury, Wise Young | 1 Comment »

Lunch!

Posted by katewillette on April 13, 2008

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

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Posted in Advocacy, CDRPA, Cethrin, Christopher Reeve | Tagged: , , , | Leave a Comment »