Please tell Guv Jerry Brown to sign the Roman Reed Spinal Cord Injury Research Act

Please support the Roman Reed Spinal Cord Injury Research Act. It’s in Jerry Brown’s hands now.

This will take 1 minute of your time and make a world of difference.

How to get in touch?

You may contact Governor Jerry Brown by mail at:

Governor Jerry Brownc/o State Capitol, Suite 1173Sacramento, CA 95814

Phone: (916) 445-2841

Fax: (916) 558-3160

Below is more from my friend Don C. Reed and Roman’s dad on this great piece of legislation.

Dear Friend of Research for Cure:

My son Roman Reed broke his neck in a college football game, September 10th, 1994, and became paralyzed from the shoulders down. Ever since, we have been fighting for a cure.

In 1999, a California law, the Roman Reed Spinal Cord Injury Research Act began quietly working toward a cure for paralysis. State-funded, it raised about $1.5 million a year, giving small grants to scientists up and down the state, from Humboldt to the North to San Diego.

It was a great program (more on that in a minute) twice-renewed by near-unanimous votes of  the state legislature. Unfortunately, two years ago, the money was removed, gutting the program.

We fought to restore funding in a non-tax way, asking that every traffic ticket add an additional $3, the money to go to the state paralysis program. Since car crash is a major cause of paralysis, other states have similar programs. But we were turned down.

This year we tried again, asking for just $1 a ticket– and we passed committee after committee, approved all the way through the California Assembly and the Senate. It was a fight every step, but people on both sides of the aisle stuck up for us.

Folks, I have held in my hands a laboratory rat which had been paralyzed, but which now walked again, thanks to research sponsored by this very program.

Should we not fight to keep this program alive?

By the time you read this, AB 1657 will be in the hands of Governor Jerry Brown. He can either sign the bill, allowing the research to go forward, or veto it—and let the program die.

If you want him to sign that bill, AB 1657, a $1 traffic ticket add-on to fight for cure for America’s 5.6 million paralyzed citizens, I ask you to contact him today:

WRITE, FAX, or PHONE Governor Jerry Brown—and ask five friends to do the same.

Here’s why: (feel free to use this as background, but it is more effective if you do not copy it.)

Small but mighty, the Roman Reed Spinal Cord Injury Research Act has accomplished much:

 

  • Funded pioneering stem cell research leading to the world’s first clinical trials for a human embryonic stem cell derived therapy;
  • Developed robotic equipment to systematize vital rehabilitation for paralytics;
  • Leveraged $15 million California into $100 million by attracting out-of-state funds;
  • Published 175 scientific papers, a small library of spinal cord injury research;
  • Invented a new Petri dish, (patent pending) to replace an expensive machine;
  • Adapted a brain/computer interface, allowing paralytics to work a key board by thought;
  • Led major innovations in rehabilitation and therapy advances to address debilitating complications.

The costs of paralysis are staggering. Depending on the injury, initial expenses for a newly paralyzed individual may run as high as $785,000 for the first year alone, with lifetime costs of $4,373,912—or, in a “best case scenario”, as “low” as only $321,720 for the first year and $1,031,394 lifetime expenses. Few families can afford such bills.

5.6 million Americans with Paralysis—11% in California

Recent estimates put patient population of spinal cord injured at 1.276 million, and all forms of paralysis at 5.6 million, roughly one in fifty Americans being paralyzed. California shares approximately 11% of this incredible financial and physical burden.

We do not need complete cure  Any improvement is hugely beneficial– in dollars as well as reduced suffering.  When my son Roman regained the use of the triceps muscles on his arms, that allowed him to drive an adapted van, instead of having to pay an attendant.

Now,  imagine a person suddenly able to breathe on their own—leaving the ventilator machine.

“Even small gains in connectivity can yield large gains in function”, says Aileen Anderson, ph.D., Director, Christopher & Dana Reeve Foundation, Associate Professor, UC Irvine. “..a treatment that restored as little as 1-2 levels of ability could save $1.4 million over the life of the patient. Extrapolating these savings to just the estimated 77,000 cervical (high neck break) patients in California results in an estimated $86 billion dollars in reduced health care costs…”  

The program does not focus on stem cells, although it would certainly cooperate with the California stem cell program on specific projects, if the need arose. But mainly the program is for everything else, the very specific needs of spinal cord injury, far beyond regenerative medicine. Of the 129 projects completed in the program’s history, only 9 involved stem cells. 

Areas of concern include: pressure sores which rot to the bone; blood pressure irregularities which can kill; temperature control problems so a person can be trembling with cold in blasting heat; bowel, bladder, and sexual dysfunction;  severe chronic pain, and more.

Grants Available to All California Scientists:

Operated by the University of California system, with headquarters at UC Irvine, the Roman Reed Act provides seed money in a competitive basis up and down the state, from San Diego to Humboldt.  Scientists from both public and private institutions may apply.

Financial Leverage

AB 1657 is revenue-positive. The state has already received better than a 4 to 1 return on its ten-year “investment” in the Roman Reed Act. Approximately $15 million California dollars attracted an additional $85 million in add-on funds from out of state resources like the National Institutes of Health—new money for the state.

Connection between penalty and program: the funding source is directly related to the injury: car crash is a major cause of spinal cord injury. Strong precedent exists.Eight U.S. states–Florida, Illinois, Kentucky, Missouri, New Jersey, New York, South Carolina and Alabama– operate similarly funded programs.

Christopher Reeve, who supported the program, said: “One day, Roman and I will stand up from our chairs and walk away from them forever.”

Cure did not come in time for the paralyzed Superman, but I believe we will see his great dream come true and defeat paralysis in our lifetime.

The flame of his faith still lights our way. Help California take up the torch again.

Write Jerry Brown today. Don’t put it off. Do it right now.

Thank you.

Don C. Reed

Citizen-sponsor, the Roman Reed Spinal Cord Injury Research Act

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