ROMAN REED SPINAL CORD INJURY RESEARCH ACT RENEWAL–???
by Don C. Reed
Would you help me with a letter?
The California State Roman Reed Spinal Cord Injury Research Act (named after my paralyzed son) is up for renewal this year.
We have done wonderfully well. In addition to 175 published scientific papers, two patents pending, and several major scientific breakthroughs, we also brought new money to California. Our ten-year total funding of $14 million was enhanced by an additional $60 million from out of state donations and matching grants—new jobs and revenue for California.
But you know how tough the situation is in Sacramento! The last time our law was up for renewal, we received virtually unanimous approval—a yes vote from every Assemblymember and Senator except one!
This year, because of the financial thunderstorms, the votes will be very close, and could go either way.
I wish everyone in California could have been with us on opening day of the Roman Reed Lab. Paralyzed Superman Christopher Reeve called to congratulate us. What a joy it was to hear that sweet familiar voice, halting, and yet so strong– my wife Gloria got so excited she photographed the telephone.
That day I held in my hand a rat which had been paralyzed, but which now walked again—and this while my paralyzed son watched from his wheel chair…
The program is beautiful; we don’t want to lose it.
Senator Alberto Torrico is leading the charge: he will face the budget battles, but we must not let him fight empty-handed. He needs letters of support from Californians, and also from affected individuals and groups from everywhere—paralysis knows no boundaries.
I ask your help. Please write a short letter, send it by ground mail, and email me a copy.
Group endorsements are wonderful, but they take time. If you cannot get approval through the group’s process in time, consider a positive alternative.
If you are a member of a group, you can list your position in it, for purposes of identification: that does not commit your group.
Here is a sample letter, use all or some of it, if you like, or write your own completely. Even one short sentence of support would be a help.
Something as uncomplicated as “My family supports AB 1931, the renewal of the Roman Reed Spinal Cord Injury Research Act” will have impact—but only if it is received.
Please write something, and do it soon, please: the voting begins mid-March. Ground mail letters must go out as soon as possible.
Assembly Majority Leader Alberto Torrico
Sacramento, CA 94249-0020
Re: support for AB 1931 (Torrico) Roman Reed Spinal Cord Injury Research Act
Dear Majority Leader Torrico:
We support AB 1931, the renewal bill for the Roman Reed Spinal Cord Injury Research Act.
In the ten years of its existence, “Roman’s Law” has spent $14 million dollars on research to try and cure paralysis—and it brought $60 million dollars in new money for California, with another $7 million pending—both progress and profit.
Scientists helped by Roman Reed research grants have generated 175 published scientific papers, a major contribution to the field. The Roman Reed Lab has helped new scientists get started, and assisted veterans with new approaches, from a way to re-insulate damaged nerves (which may help other neurological conditions such as spinal muscular atrophy, a disease which kills children, often before the age of two) to a new variation of the Petri dish, unchanged for decades, updating to cheaply sort cells. Laboratory rats so badly paralyzed they could only drag themselves before, are scampering now, thanks to this research. It must go forward.
Paralysis affects roughly 464,000 Californians, at a cost of about $1.5 billion dollars a year. The suffering endured by paralyzed people and their families cannot be counted.
This bill is small, (just $1.5 million a year, ironically, that figure is one one-thousandth the cost of the problem) but mighty: it helps California, and the world; it deserves unanimous support.
We stand with Roman Reed, who said: “Take a stand for research for cure—take a stand, so one day, everybody can.”
If you want to put more—or just a single sentence of support, that’s fine.
If your group can send a support letter, that’s wonderful!
But any help is better than no help. We need lots of letters.
Feel free to contact me if you need help with the letter language.
(Below is a press release from Majority Leader Torrico, and AB 1931 information.)
FOR IMMEDIATE RELEASE CONTACT: Jeff Barbosa
February 17, 2010 916-319-2723
TORRICO BILL WILL EXTEND FUNDING
FOR INNOVATIVE SPINAL CORD INJURY RESEARCH
Named after a Chabot College football player injured during a game, the Roman Reed Program supports scientific research in neural regeneration.
Sacramento – Assembly Majority Leader Alberto Torrico (D-Fremont) introduced legislation to extend funding for research into spinal cord injuries. Funding for the Roman Reed Spinal Cord Injury Research Act is due to expire next January.
Torrico’s AB 1931 will extend funding for an additional five years.
“About 646,000 Californians live with paralysis from various neurological conditions and the Roman Reed program funds critical research throughout the state that could improve their quality of life and their ability to achieve everyday tasks,” Torrico said. “Leveraging the $13.9 million in state funds allocated so far, researchers have brought in about $60 million in additional grants from the National Institutes of Health and other sources to enhance our knowledge and understanding of spinal cord injuries.”
The program is named after Roman Reed, a former Chabot College football player who suffered crushed vertebrae during a game. Reed became an advocate for spinal cord injury research and in 2000 the Roman Reed Spinal Cord Injury Research Act was signed into law and later renewed in 2005.
The research funds are allocated to the University of California and administered by the Reeve-Irvine Research Center at the University of California, Irvine. To date, more than 300 Californians have participated in 120 research projects. Each year, scientists in the spinal cord injury research arena gather at a “Meet the Scientists” forum sponsored by the program to discuss the best methods to collaborate on creative spinal cord research.
“By extending the funding for an additional five years, the bill will help continue what California began in 2000,” Reed said. “This research will make an enormous contribution to those of us suffering from spinal cord injury paralysis.”
Research partially funded by the program, conducted by the University of California, San Francisco, University of California, San Diego and UCLA, among others, has studied how the nervous system can use new pathways to issue commands to move; how drugs that block the body’s immune response to the initial trauma could increase the chance of recovery from spinal cord injuries; and when some of the research could find its way to human clinical trials.
Roman Reed Spinal Cord Injury Program Fact Sheet
California is home to approximately 646,000 people living with paralysis from various neurologic conditions. Nationwide, someone suffers a traumatic spinal cord injury every 41 minutes (based on an estimated annual incidence of 40 new injuries per million population) leading to a significant loss of earning potential and high medical costs associated with their disability. Furthermore, a recent national study estimates that 1.3 million Americans live with paralysis due to spinal cord injuries1, which is close to 5 times higher than previously reported statistics. Given this increasing number of paralyzed people, rising health care costs with caregiver needs and loss of income potential, the total cost to the State of California approaches $ 1.5 billion per year. Promising research-driven therapies could greatly improve the quality of life and functional capacity of SCI individuals, thereby lessening this tremendous financial burden to the State.
The Roman Reed Bill was signed in September 2000, and was renewed in 2005, through AB1794, which was signed by Governor Schwarzenegger in September 2004. Over its 9-year history, the fund has provided approximately $1.5 million per year for spinal cord injury research in the State of California. The Roman Reed Research funds are allocated to the University of California (UC), and the UC Office of the President allocates the Reeve-Irvine Research Center at the UC, Irvine to administer the funds.
Roman Reed Program:
A portion of the Roman Reed funds support the Roman Reed Core Laboratory, allowing for the rapid translation of ideas into research, by making it possible for any scientist with a novel idea to immediately undertake experiments in well-developed animal models. The second portion is used to launch unique, creative, research projects by scientists throughout the state of California. The program provides seed funds for highly innovative projects that are stepping stones for new federal and other funding.
Roman Reed Research Awards:
Between 2000 and 2009 over 300 Californians have participated in 120 Roman Reed Research projects. During that time, 64 graduate students have been supported as Roman Reed Fellows.
Over 1000 people have participated in Roman Reed sponsored public events over the past 9 years. The goal of the annual “Meet the Scientists” Forum is to bring the spinal cord injured community into the research arena.
The total amount of Roman Reed funding from the program’s beginning in 2000 through 2009 is $13,880,100. These funds have been leveraged into $59,969,394 in new funds being brought into the state through federal and other grant sources; an additional $7,351,391 is pending.
 Christopher and Dana Reeve Foundation, 2009
 National Spinal Cord Injury Statistical Center, 2009