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Five to Stay Alive: Paralysis-Cure Bill Faces Key Committee Vote in California

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This Tuesday a vote will be held in Sacramento on whether to allow the Roman Reed Spinal Cord Injury Research Act to go forward. So near, and yet so far. Nine members of the Transportation and Housing Committee are voting, and we need five "yes" votes to stay alive. What if one person is in a bad mood that day? It is so easy to say no.

I am the dad of Roman Reed, the paralyzed young man who inspired California's Roman Reed Spinal Cord Injury Research Act of 1999. The program was highly respected and successful, twice renewed by unanimous vote of Assembly and Senate, until its funding was eliminated. Now, we are fighting to put that funding back.

Assembly Bill 1657 is a traffic-ticket add-on of $1 to restore that funding. A.B. 1657 passed the Assembly and will now be heard June 26 by the Senate Transportation and Housing Committee. Why traffic tickets? Because car crashes are a major cause of spinal-cord injuries.

Why single out spinal-cord-injury research for funding? Because most injuries heal, but spinal-cord injuries never do. Paralysis is the most devastating insult the body can receive; it affects 5.6 million Americans, and it is forever, until you die. Moreover, studying spinal-cord injury may benefit many people with conditions other than paralysis, including those with multiple sclerosis, muscular dystrophy, ALS (Lou Gehrig's disease), spinal muscular atrophy (which kills children, often before the age of 2), Parkinson's disease, traumatic brain injury, and more. These conditions devastate our loved ones and our economy; a quadriplegic like my son may face lifetime medical costs of $3 million to $5 million.

But what about concerns that traffic-ticket add-ons are already high and may be unfair to low-income drivers? These concerns are legitimate, and we have altered our bill to address them. Last year we requested $3 per moving violation, which was turned down by Assembly Appropriations. This year we lowered the amount requested by two thirds, asking only $1 per ticket, the smallest increase allowed by law. We follow a precedent set by seven other states -- Florida, Illinois, Kentucky, Missouri, New Jersey, New York, and South Carolina -- and possibly an eighth state, Alabama, where a program imitating the Roman Reed Act just passed their state senate. All these states use traffic fines to fund spinal-cord-injury research, but with higher add-on penalties than ours, as much as $100 per ticket, while our bill asks only $1 -- pennies for paralysis.

Administered by the University of California, the Roman Reed Core Laboratory at UC Irvine has become one of the key spinal-cord-injury (SCI) research institutions in America.

Small but mighty, "Roman's Law" has achieved 175 published scientific papers, each a piece of the puzzle of the cure. Two patents are pending, one a new form of Petri dish, modernized to sort cells cheaply. Our breakthroughs range from practical to amazing: from cost-saving new methods of rehabilitation using robotics, to an electronic "bridge" to surpass the wound injury scar, to a way to reduce the injury itself by modifying the body's immune reaction.

Amazingly, the Roman Reed Act is revenue-positive, bringing in more money than was invested. In its 10-year history, our program spent roughly $14 million California taxpayer dollars but attracted an additional $64 million in matching grants from outside sources like the National Institutes of Health -- new money for the state.

A.B. 1657 is endorsed by Lt. Governor Gavin Newsom, the University of California (UC) system, Art Torres (retired California state senator), Bob Klein (author of the California stem-cell program), Bill Monning, Gil Cedillo, Tom Ammiano, Jerry Hill, Holly Mitchell, V. Manuel Perez, Nancy Skinner, Mike Davis, the California Healthcare Institute (CHI), Hans Keirstead (his project achieved the world's first human trials in embryonic-stem-cell research), Shinya Yamanaka (who invented a substitute for embryonic stem cells), Nobel Laureate Paul Berg (Nobel-Prize-winner for DNA research), Sherry Lansing (former president of Paramount Pictures), former state controller Steve Westly, Leeza Gibbons (board member of the California stem-cell-research program and former host of Entertainment Tonight), Brock Reeve (Christopher Reeve's brother and director of the Harvard Stem Cell Institute), Jeanne F. Loring (director of the Center for Regenerative Medicine at Scripps Research Institute), Mary Vassar (executive director of USCF General Hospital Brain and Spinal Injury Center), and many more.

It is a tough fight, of course (passing a bill nowadays is an uphill battle), but it is nothing compared to the struggle every paralyzed person faces every day.

We will fight on. And if we never give up, we can only win or die. And everybody dies -- so why not try?

* * * * *

If you're in Southern California, visit the Roman Reed Laboratory at UC Irvine, or check out our website and download our 58-page report.

Please help us pass A.B. 1657, which has a legislative legacy of down-to-earth practical research for a cure. Send a one-sentence email to one or more of the senators listed below. If you only have time for one, please contact the chairperson. Your letter could be as short as: "I support A.B. 1657, a way to fund the Roman Reed Spinal Cord Injury Research Act." That alone would be so helpful. More is nice, of course, but is up to you. Time is short, unfortunately, and your support to any degree would mean so much.

Senate Transportation and Housing Committee, 1:30 p.m., June 26, Room 4203
Chair, Sen. Mark DeSaulnier (D-Concord) Room 5035
916-651-4007
Senator.desaulnier@sen.ca.gov

Sen. Christine Kehoe (D-San Diego) Room 5050
916-651-4039
Senator.kehoe@asm.ca.gov

Sen. Alan Lowenthal (D-Long Beach) Room 2032
916-651-4027
Senator.lowenthal@sen.ca.gov

Sen. Fran Pavley (D-Agoura Hills) Room 4035
916-651-4023
Senator.pavley@sen.ca.gov

Sen. Michael J. Rubio (D- Bakersfield) Room 2066
916-651-4016
Senator.rubio@sen.ca.gov

Sen. Joe Simitian (D-Palo Alto) Room 2080
916-651-4011
Senator.simitian@sen.ca.gov

Republicans on the Committee
Sen. Ted Gaines (R-Fair Oaks) Room 3056
916-651-4001
Senator.gaines@sen.ca.gov

Sen. Tom Harman (R-Huntington Beach) Room 5094
916-651-4035
Senator.harman@sen.ca.gov

Sen. Mark Wyland (R-Escondido) Room 4048
916-651-4038
Senator.wyland@sen.ca.gov