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Crashing Roman's Van: Disability Community Fights On

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Before his van crashed, Roman Reed was having a great day.

He was driving home after giving a speech at the University of California at Irvine, about the new bill (Assembly Bill 190, Wieckowski, D-Fremont) to fund the Roman Reed Spinal Cord Injury Research Act.

Some great scientists had endorsed the program: Paul Berg, winner of the Nobel Prize for his work with DNA; Shinya Yamanaka of Japan, inventor of Induced Pluripotent stem cells; Dalton Friedrich, who leads the world-renowned Miami Project to cure paralysis; Zach Hall, former director of the National Institute of Neurological Disorders and Stroke (NINDS) and more.

If we can pass it, the bill will be a winner: costing the taxpayer absolutely nothing, it would be funded by a $3 fine for reckless driving.

Snow began falling when Roman reached the Los Angeles grapevine, and he slowed down.

But we did not want the research to slow down. The bill I thought of as "Roman's law" was small, just $1.5 million a year, but it had always brought in far more money than it cost. For a total investment of $14.6 million over ten years, the successful research had attracted $63.8 million in additional money from the National Institutes of Health and other sources, new money for California.

But our little bit of funding had been removed.

The bill to continue the research, Assembly Bill 190, would be decided April 5th at Tom Ammiano's Public Safety Committee in Sacramento...

The van hit a patch of black ice. Losing traction, it spun completely around, twice.

Roman was in the driver's seat, having transferred from the 300 pound wheelchair behind him. The huge power chair now flipped like a toy -- the van rammed into the guardrail with a terrific impact -- one wheel bent the rail, hanging over the abyss.

Then silence, except for the tick...tick...tick... of the engine block, contracting as the metal cooled.

And there my son stayed, until kindly truckers stopped in the snow.

Roman is 6'4", 235 pounds, and for the past 16 years he has been paralyzed from the shoulders down.

His wheelchair was broken in half. The tow-truck got the van to a nearby Wendy's, where the manager was kind enough to let him leave it overnight, and Roman said goodbye to the truckers, and sat in a booth.

"Oh, hi, Dad," he said on his cell, "I had a little accident...."

Fortunately, Gloria's sister Leah was driving North not far from him, and she and husband Steve immediately turned their car around and drove back onto the snowy grapevine. They got Roman out, just before the road was closed down.

Roman's van was raided in his absence, and his I-pad and laptop computer were stolen.

Welcome to the world of the paralyzed advocate.

Why was it so important that Roman make such a long and difficult trip?

This is a time of crisis. Everything we have fought for these past sixteen years is on the line.

Selfishly, I want to see paralysis cured in this lifetime.

But what motivates Roman is larger than if he gets out of the wheelchair or not.

We are fighting for a better world.

When John F. Kennedy said, "We are going to the moon", that united a country -- and from the space race sprang the computer revolution.

Biomedicine is just as game-changing. Last year, incurable disease cost America $1.65 trillion dollars--more than the entire national debt for the same amount of time.

The inability to pay those colossal bills is dragging down the economy, here and all across the world.

If we can cure paralysis, the very symbol of what cannot be cured, then we will have proven that curing all chronic disease and disability may be within our reach.

Everything is coming together, if we can just pass this single bill.

If we can pass AB 190, we will (for the first time!) have serious money to focus specifically on paralysis: roughly eleven million a year.

If there are stem cell components to the cure, researchers may be able to take their small successes with our funding and use that preliminary data to qualify for a larger California stem cell program grant.

Successes with either will make scientists eligible for add-on grants from the federal government.

Scientists will begin start-up companies -- working toward clinical trials...

And then at last, when an approach has proved itself to be practical and worthy, the big bucks people -- venture capitalists and giant corporations -- will get involved.

Five steps:

1. A scientist gets an idea.
2. An RR grant funds him/her in a small way.
3. The California stem cell program finds something it likes, and supports it with grants.
4. The NIH and other sources provide add-on grants.
5. A company takes it to clinical trials -- and the giant corporations make it available.

Is that not wonderful? Everybody wins: Republicans, Democrats, Greens, Independents--we all know somebody who is seriously ill -- and nobody likes paying taxes to provide for the endless medical bills of the incurably ill.

AB 190 just has to pass.

When Roman got home, his 20 month old daughter, Katherine, looked at the dried blood on his face and said: "Daddy hurt!" Then she ran for the box of baby wipes and went to work on Daddy's face, scrubbing the bloodspots vigorously on his bruised lips. It had to have hurt a lot, but he kept smiling until she nodded, satisfied her father was all better now.

Roman was lucky. No serious damage was done. His accident was caused by road conditions.

But for many, reckless driving is the cause of paralysis. One drunk driver can ruin a person's physical life. Assembly Bill 190 recognizes that reality, and penalizes those who put us all at risk.

If I had my way, every judge who administers the traffic fine would mention that $3 of the penalty is going to try and cure spinal cord injury paralysis, of which reckless driving is so often a cause.

As for Roman, he 's out of action for a while, right? Well, not exactly. My son is not good at giving up.

After Katherine's vigorous healing of his face, Roman went to work on Craig's list, locating a twelve-year-old van and a second-hand wheelchair. A home loan was arranged; modifications were begun.

Yesterday we drove him to San Francisco for a meeting (he would not let us stay there for it) after which he took BART home.

A couple hours from now as this is written, we will drive Roman to the repair yard to get the new/old van. All we need now is two batteries ($300 each) for the electric chair, and in the words of Willie Nelson, Roman will be "On the road again..."

P.S. AB 190, the non-tax method of funding spinal cord injury research for cure, will be decided April 5th, at the California Assembly Public Safety Committee, chaired by Tom Ammiano (D-San Francisco). You are welcome to join Roman and other wheelchair warrior friends at the historic vote.

If you want to do something to help pass the bill, just cut and paste the following into your browser.

http://lcmspubcontact.lc.ca.gov/PublicLCMS/ContactPopup.php?district=AD13&

It will take you to Committee Chairman Tom Ammiano's contact box.

Just say you support AB 190, because it is a reasonable way to fund paralysis cure.

But do it now, please, we are almost out of time.