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Archive for the ‘Advocacy’ Category

Capitol Hill Kickoff Banquet

Posted by katewillette on April 15, 2008

Well, I wasn’t going to write during this event . . . we’re eating this very nice dinner in the ballroom while some speakers entertain us.  Wise has spoken with his usual passion and eloquence about what’s happened in the last few years and about what motivates him to get this bloody thing cured.  He’s just so relentless when it comes to making a cure happen.

And so I thought, you know, I’d just eat my salmon and tell about it later.  But then Joe White got up on the stage and started talking about how the CC site helped to get him out of his isolation after breaking his neck.  And that even might not have been enough to get me typing, but then he started talking about Indiana and what happened there.  Still, I’m thinking, I could capture this later.

No.

Joe’s up there showing some beautiful pictures from former rallies and telling about what he did in Indiana — and the picture that made me haul out the laptop one more time was this: Joe sitting inside a little booth he’d made to pass out information about SCI and the cure for SCI at a little fair in Indiana.  He’s sitting up here in front of that image telling us how he started a 5-person support group back home so that he wouldn’t feel so isolated.

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Michael and Rachel

Posted by katewillette on April 14, 2008

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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Posted in Advocacy, Christopher Reeve, paralysis, spinal cord injury | Tagged: | Leave a 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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Opening session

Posted by katewillette on April 13, 2008

In the ballroom, and believe me it was an effort to get everybody to stop schmoozing and roll down here for opening remarks.  The speaker is a woman named  Phyllis Gray from Kennedy Kreiger . .  she’s saying

“Most of the important things have been accomplished by people who kept on trying when there was no hope at all.”

Marilyn Smith, (class act extraordinaire!) gets up and starts off with the housekeeping rules . . . cell phones, where to register, what’s in your bag, where to go for the breakout sessions.  The plan this year is to have each of the speakers do their thing twice, but even so we’ve had to choose four sessions from a possible seven.

Credit to the sponsors of w2w, who make this possible — Kennedy Kreiger, Sci-Step, NWI Spinal Cord Injury Group, Novartis, Acorda, National Rehab Hospital, Sam Schmidt Foundation, Alseres Pharmaceutical, Pride Mobility Products Corporation, Center for Spinal Cord Injury Recovery, Integra Foundation, Restorative Therapies, Medtronic, Project Walk, Bioness, Craig Hospital, Push to Walk, Boston Medical Center, Next Steps Chicago, Determined2Heal . . . I mention all of them by name because

Marilyn is talking about the first rally 4 years ago, which began with a tape of  Bob Marley singing “Get Up, Stand Up, Stand Up for Your Rights!”  She says that she looked at her new friend Sue Maus, who was in tears.  Sue asked her to wipe her face.  Marilyn says she’s working for the day when Sue can wipe her own eyes.

She introduces Sean Tipton, former president of CAMR.  He’s got a slide show and the title slide is up:

Successful Advocacy

He starts with the Why and How . . . the first amendment says we as citizens get to come to Washington and bitch!  This begins with registering to vote, then actually doing it.  Slide is an image of guy in a chair entering a polling place.  The politicians are not going to do stuff for us just because it’s right.  They should, but they won’t.  Next is — $$$$.  Shouldn’t matter, but really, really does.  He says he knows that for lots of us it’s distasteful, but it’s also important to understand that it matters.

What else?  Show up.  There are town hall meetings, there is the postal service, there are telephones, and of course there is email.  We should definitely be getting the personal emails from the congressional staff we speak with this week.

What happens when you visit Capitol Hill?  He recommends keeping track of the “4 R’s”:

Relax.  (And don’t be taken aback by the fact that some aides seem to be about 12 years old.  They’re probably the smartest, hardest-working young people you’re going to run across.)

Respect. (These people are certainly doing you a favor by giving you some of their time.  Don’t waste it.)

Remember: (Their names, the vibe you get from them–write things down.)

Relationships: (DC runs on relationships.  Build them.  Keep those email addresses and use them to say thanks for their time.  Don’t assume that the person you’re talking with can’t really help you.  They probably can.)

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