Five to Survive: Paralysis Cure Bill Faces Key Vote

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Five to Survive: Paralysis Cure Bill Faces Key Vote

June 22, 2012 by diverdonreed

FIVE TO STAY ALIVE: Paralysis Cure Bill Faces Key Committee Vote

by Don C. Reed

AB 1657: $1 TRAFFIC TICKET ADD-ON May Fund Roman Reed Spinal Cord Injury Research Act

This Tuesday, a vote will be held in Sacramento: to allow the Roman Reed Spinal Cord Injury Research Act to go forward, or not.

So near, and yet so far… 9 members of the Transportation and Housing committee voting, and we need 5 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. AB 1657 passed the Assembly, and will now be heard by the Senate Transportation and Housing Committee, June 26^th.

Why traffic tickets? Car crash is a major cause of spinal cord injury.

Why single out spinal cord injury research for funding?

Most injuries heal. 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.

Studying spinal cord injury may benefit many other conditions: not only paralysis, but also multiple sclerosis, muscular dystrophy, ALS Lou Gehrig’s disease, spinal muscular atrophy (which kills children, often before the age of two), 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 three to five million dollars…

But 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 2/3, asking only one ($1) dollar 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, 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 one dollar: 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 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 ten year history, our program spent roughly $14 million California taxpayer dollars—but it attracted an additional $64 million in matching grants from outside sources like the National Institutes of Health—new money for the state.

AB 1657 is endorsed by Lt. Governor Gavin Newsom, the University of California (UC) system, Art Torres (California State Senator, ret), 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 embryonic stem cell research human trials) Shinya Yamanaka (who invented a substitute for embryonic stem cells), Nobel Laureate Paul Berg (Nobel Prize-winner for DNA research), Sherry Lansing (former President, Paramount Pictures), former state controller Steve Westly, Leeza Gibbons (Board Member California stem cell research program, former host Entertainment Tonight), Brock Reeve (Christopher’s brother and director of Harvard Stem Cell Institute), Jeanne F. Loring (Director, Center for Regenerative Medicine at Scripps Research Institute) , Mary Vassar, Executive Director UCSF, San Francisco General Hospital Brain and Spinal Injury Center) and many more.

In Southern California, visit the Roman Reed Laboratory at UC Irvine. Or check out our website (http://www.reeve.uci.edu/Research/RomanReed.aspx and download our 58-page report.

Please help us pass AB 1657, a legislative legacy: down-to-earth practical research for 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 AB 1657, a way to fund the Roman Reed Spinal Cord Injury Research Act”—that would be so helpful. More is nice, of course, but is up to you. Time is short, unfortunately, and your support in any amount would mean so much.

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?

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