|02-03-2011, 10:31 PM||#1|
Join Date: Aug 2001
Location: Roseville, CA
Please write a 1 - sentence email or fax.
California's Roman Reed Spinal Cord Injury Research Act is out of funds. So are many other causes. By reading Don Reed's article below, you will see that all we need is a HUGE volume of letters, more than advocates for other causes produce, to get SCI funding again.
Please write a letter AND get as many friends and family to write a letter. Out of state is okay.
Description: Don C. Reed
Don C. Reed
Sponsor, California’s Roman Reed Spinal Cord Injury Research Act of 1999
Posted: February 2, 2011 06:33 PM
“Roman’s Law”, Assembly Bill 190 (Wieckowski, D-Fremont) on Huffington Post
In a Perfect World: A Law to Cure Paralysis -- Paid for by Those Who May Cause It!
A two-year-old runs out on a neighborhood street -- just as a reckless driver roars around the corner.
A screech of brakes, a scream of fright -- but a hand snatches the toddler back, just in time. The parent hugs and soothes the terrified child, the car disappears in the distance... and its driver gets away with a crime that could have ruined a life, and a family.
In a perfect world, a siren would sound, a red gumball would start blinking, and the neighborhood would applaud the driver's capture, and the impounding of the car.
We do not live in a perfect world. But we can and should hold drivers accountable for their vehicular misbehavior, especially when it endangers the public.
Because we all know what could have happened to that toddler in the street.
Car impact is the number one cause of spinal cord injury paralysis. For a child to suffer that devastating condition is about the worst fate imaginable, short of death.
Those whose heedless actions can inflict agony on others should be part of the answer: helping repair what their recklessness may cause.
That is the fair-play principle behind AB 190 (Assemblyman Bob Wieckowski, D-Fremont), a brilliant new California bill to make bad drivers help cure spinal cord injury paralysis.
Here's how it works.
If the Wieckowski bill goes through...
"AB 190...will impose a $3 additional penalty on all moving traffic violations and dedicate the revenue to the Roman Reed Spinal Cord Injury Research Fund, which is operated by the University of California."
No good driver will be affected; no taxpayer will lose one cent.
Who benefits? Everyone.
A paralyzed person may face medical costs in the millions of dollars. Since most of us don't have such money, that means government assistance, which means taxes.
Anyone who hates taxes should support research to cure chronic disease and disability -- and here is a way to pay for it -- without costing taxpayers a penny.
I am the father of Roman Reed, a young man who was paralyzed in a college football accident sixteen years ago, September 10th, 1994.
California passed a law named after him, the Roman Reed Spinal Cord Injury Research Act of 1999, Assembly Bill 750 by John Dutra, (D-Fremont).
Small but mighty, until its funds were removed, that law was a roaring success.
Have you heard of the Geron trials for a spinal cord injury treatment with stem cells?
"Roman's Law" funded that research first, giving grants to the work of Dr. Hans Keirstead, when no one else would. After his experiment succeeded, and the paralyzed rats began to walk again, other grants poured in -- but our small law began it.
Back then, there was no California stem cell program. Roman's law funded the first use of President Bush-approved stem cell lines. Today, with the Golden State's stem cell program in full operation, we do not need to duplicate it. Stem cell research is now only a tiny part of Roman's law, less than three (3) per cent of the total, so that we can focus on the many other aspects of spinal cord injury research for cure.
In addition to 175 peer-reviewed publications, each one a piece of the puzzle called cure, we funded such amazements as an "Avatar" helmet, using the power of thought to move a computer cursor across the screen, allowing a paralyzed person access to the Internet; developed amazing new rehabilitation methods which can help recuperation from any condition; even helped fight for the cure of children afflicted with Spinal Muscular Atrophy, a singularly terrible form of paralysis which often proves fatal, even before the age of two. One scientist developed a primate "model" for paralysis, in which a monkey had just one finger paralyzed. It lived essentially a normal life, but if we could get that single finger working again...
Even judged by financial terms alone, the program was hugely successful: a money magnet, bringing new funds and jobs to the Golden State.
When a scientist had a success with one of our small grants, that gave him or her all-important "preliminary data". These proofs of concept had practical value: improving his or her chances at larger grants elsewhere.
California's investment more than quadrupled. Over nine years of the program's existence, its $14 million was increased by matching grants and add-on funds from the National Institutes of Health and other sources -- an additional $60 million in new money. This benefited the University of California system, every dollar benefiting the state economy.
Think of that: California's $14 million became $74 million: how many programs can make such a statement, that they brought in more money than they cost?
In 2010, the entire California Assembly and Senate approved the renewal of Roman's Law, and Governor Arnold Schwarzenegger (always a friend of biomedicine) signed on as well; how many times do Republicans and Democrats agree 100% on anything?
But the economic downturn dried up our funding. There were no dollars for it, in the General Fund. There was not enough money, everything was being cut. The agony of paralysis was just one of the tragedies Sacramento suddenly had no money to fight.
We understood; but we did not accept. We had been down this road before.
In its original version, Roman's law could have brought in as much as $75 million a year. This was thought excessive by the Senate Appropriations Committee, which cut it down to $19 million a year, still a wonderful amount.
Then the energy crisis came and our funding was killed outright.
From a possible $75 million, down to $19 million -- down to zero.
But we came back and tried again, because it was important. I am sure they got sick of seeing us, me and Roman and Karen Miner and Susan Rotchy and Fran Lopes and all the rest of the wheelchair warriors, family and friends -- we crowded into the tiny Sacramento offices again and again and again.
We ran into opposition from a surprising source: the American Automobile Association. When I asked their lobbyist why, she told me she would have to be against anything which messed with drivers, even bad ones.
So, we mounted a hard copy letter-writing campaign specifically to her office. I am told so many letters were pushed through the mailslot in the door that it was difficult to open.
The AAA changed its position from oppose to neutral.
Eventually we did achieve state funding: one million dollars a year. Then it went up to two million, back down to one and a half million, where it stayed -- until now.
Today, the general funding for Roman's law is shut off. But the program itself was so good that the door was left open for alternative methods of funding -- and that is exactly what Assembly Bill 190 would provide.
Assemblymember Bob Wieckowski's bill (AB 190) will bring Roman's law back to life, without costing taxpayers a cent.
Only bad drivers will contribute, as well they should.
We have met every requirement. By any standard, the Roman Reed Spinal Cord Injury Research Act has succeeded, and now we even have a non-tax source of funding.
Our small law has earned its right to "Go forward", as Christopher Reeve liked to say.
I once asked a retired nurse: what were my son's chances of ever walking again? She might have been eighty, but her smile made her young.
"Hope is realistic," she said, "and work can make it happen."
Help us now.
We need your personal (and/or group!) letter or email of support.
You can do it, with a simple one sentence email to: Assemblymember.Wieckowski@assembly.ca.gov.
Or FAX your letter to: 916-319-2120.
If you can write just one sentence, you can help us fight paralysis--it costs you nothing, and it may bring cure to a vicious condition.
Here is the sentence:
"Dear Assemblymember Wieckowski:
I support Assembly Bill 190, which would impose a small fine on reckless drivers, the proceeds going to the Roman Reed Spinal Cord Injury Research Fund, which is operated by the University of California."
If you want to write more, that would be great, but that single sentence is what counts.
Do it right now, before you forget; help every paralyzed person in the world come closer to cure.
As Roman always says: "Take a stand, in favor or research for cure--take a stand, so one day, everybody can."
Oh, and one thing more: We are exploring the idea of making our grants open to research for cure of traumatic brain injury as well. If you think that is a good idea, let us know.
Send letters of support to Assemblyman Bob Wieckowski, State Capitol, P.O. Box 942849, Sacramento, CA 94249-0020. For co-authorship information call: 916-319-2020
FAX: 916-319-2120 Email: Assemblymember.Wieckowski@assembly.ca.gov
Thank you very much, and below is the official press release for AB 190.
WIECKOWSKI INTRODUCES LEGISLATION TO BOOST
SPINAL CORD INJURY RESEARCH
A $3 fine on traffic violations would invest new funds for biotech research
SACRAMENTO - With motor vehicle accidents being the leading cause of spinal cord injuries in the United States, Assemblymember Bob Wieckowski (D-Fremont) today introduced AB 190 to boost spinal cord research in California by levying a $3 fine on all moving traffic violations.
Under AB 190 money raised from the fines would go into the Roman Reed Spinal Cord Injury Research Fund, named after a 20th Assembly District resident who has become a strong advocate for research after suffering a spinal cord injury.
"Motor vehicle accidents are the leading cause of 40 percent of these injuries and by investing in advanced research, we can move closer to a cure for the more than 600,000 Californians living with paralysis," Wieckowski said. "It makes sense to levy this small fine on violators. These research funds could lead to pioneering breakthroughs in biotechnology that not only help patients but our state-wide biotech economy too."
The Roman Reed Spinal Cord Injury Fund was established in 2000 by legislation, AB 750, carried by former Assemblymember John Dutra.
"We are very grateful to Assemblymember Wieckowski for his efforts to renew AB 750," Dutra said. "Proven research accomplished by the Roman Reed Spinal Cord Injury Research Facility at UC Irvine, established by AB 750, has resulted in remedies that in the foreseeable future will allow hundreds of thousands of Californians in wheelchairs to walk again."
The fund has provided $14 million to California research scientists and attracted an additional $60 million in federal funds and grants. Currently 175 peer-reviewed publications have been funded, and research in the field may also benefit the drive for cures of Spinal Muscular Atrophy, Multiple Sclerosis and other disorders. The fund is administered by the University of California. However, in recent years the General Fund support for the program has dried up.
"By taking a stand and funding this research, California can lift up the hopes and spirits of all of us who look forward to walking away from our wheelchairs," Roman Reed said.
Assemblymember Wieckowski represents all of Fremont, Newark, Union City and Milpitas, and parts of Pleasanton, Castro Valley and Hayward.
Contact: Jeff Barbosa: 916-319-2020
Follow Don C. Reed on Twitter: www.twitter.com/diverdonreed
C 3/4 inc. central cord
10/29/1992 - 18 years, but who counts?
|02-04-2011, 02:14 PM||#3|
Join Date: Aug 2001
Location: Roseville, CA
I sure hope other follow your actions.
C 3/4 inc. central cord
10/29/1992 - 18 years, but who counts?
|02-05-2011, 01:47 AM||#5|
Join Date: Jun 2008
Done. The Reeds are relentless! In the best way possible.
SCINet Clinical Trial Support Squad Member
Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.
You can also support the SCINetUSA clinical trials by buying or helping to sell bracelets from http://www.scibracelets.com
|02-05-2011, 06:50 PM||#6|
Join Date: May 2006
Location: Central NJ
Done here too. I revived a bit of my New Jersey letter, which I hope serves us better in California than it did among the shortsighted here.
|02-09-2011, 03:11 PM||#7|
Join Date: Jan 2002
Location: NJ Shore
SCINetUSA Clinical Trial Support Squad Member
Please join me and donate a dollar a day at JustADollarPlease.org and copy and paste this message to the bottom of your signature.
You can also support the SCINetUSA clinical trials by buying or helping to sell bracelets from SCIBracelets.com
Raise money for SCINetUSA just by searching the Internet with http://www.goodsearch.com/ or shopping online with http://www.GoodShop.com (R.U. Foundation, Piscataway NJ)
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