Paralysis Cure Decision Tuesday Morning
by Don C. Reed
This Tuesday morning, April 26th, 2011, spinal cord injury research for cure will take a giant leap forward– or not.
Assembly Bill 190 (Wieckowski, D-Fremont) will provide non-tax funding (a fine for reckless drivers) money to go to fund the Roman Reed Spinal Cord Injury Research Act.
9:30 AM, in the Public Safety Committee, seven members will listen to arguments, and decide: yes, or no. (Their names and legislative aide’s email addresses are below.)
Roman Reed will speak. My paralyzed son was the inspiration for the Roman Reed Spinal Cord Injury Research Act; he will talk, and probably someone from the biomedical industry, so crucial to our state’s financial recovery. Only two witnesses will speak. But if I am allowed the privilege, this is roughly what I would say:
Honored members of the Public Safety Committee:
Here is how paralysis can be cured, piece by piece, like putting together a puzzle.
1. scientist gets an idea;
2. he/she approaches Roman Reed SCI Research program, asks for grant;
3. the review board (experts, all from out of state, to reduce possibility of conflict of interest) rules on the project;
4. If approved, scientists takes small grant (seed money) works at RR lab;
5. with success, he/she applies for more substantial funding from NIH, CIRM, other sources;
6. FDA approves human trials;
7. product is developed, and either sold to biomed, or becomes start up company
One of the ideas developed on a Roman Reed grant went through those steps, and was sold to Geron, which has it in human trials right now. Another offshoot of that grant was a startup company, California Stem Cells Inc., which is employing Californians today.
Spinal cord injury has long been considered impossible to cure. On the walls of an Egyptian tomb are the following words, in pictograms: “Of paralyzed soldiers, deny them water, let them die– there is nothing that can be done.” Until just recently, that was the truth.
But no more.
On March 1, 2002, I held in my hands a rat which had been paralyzed, but which walked again– this was the famous rat mentioned by paralyzed Superman Christopher Reeve, when he said: “Oh, to be a rat!”
It took nine years, but today we stand on the threshold of cure. Pride compels me to say that it was California research that made that difference.
Other states have done wonderful work, and the private charities have labored heroically. But the Roman Reed Spinal Cord Injury Research Act provided .6 million in state funds, which gathered in an additional .8 million in add-on grants from other sources like the National Institutes of Health. To the best of my knowledge, no state program anywhere has done more. We must not let that effort cease.
We are so close; but we are not there yet. Help us finish the job.
We ask no money; just let us to make reckless drivers chip in to the program. It will be insignificant to them; it will cost California taxpayers nothing. But it could mean everything to paralyzed people.
We can cure paralysis in our lifetime. I am 65. If I make it to my father’s age– he is still playing tennis at age 88—that gives me roughly 20 years. With the targeted research of the Roman Reed Act, I fully expect to see my son walk again.
Even the smallest improvements are huge; like when Roman regained triceps function, that allowed him to drive an adapted vehicle, instead of needing an attendant.
Think what it could mean to regain the use of your hands– or merely be able to get up in the morning and use the restroom without it being a 2-3 hour ordeal.
We can alleviate suffering. We can bring cure, piece by piece. We can do this.
Or, we can let it go– leave cure for somebody else– for another generation. We can let the darkness prevail.
Everything depends on your vote. Do not be the person who blocks that progress.
That will be the end of my remarks: but if I was given another minute, I would read the letter of Marilyn Smith, founder Unite 2 Fight Paralysis, who said:
To the members of the California legislature,
Over 8 years ago my then 22-year-old son suffered a spinal cord injury. He was driving to his college apartment when a truck going the opposite direction lost its front wheel; the wheel became airborne and crashed into my son’s pickup, breaking his neck. The other driver, who had tightened his own lug nuts, was uninsured and destitute; we received no compensation for his carelessness but instead faced hundreds of thousands of dollars in medical bills. My son faces a lifetime of exorbitant health care costs and demands on his time. The consequences to the other driver??? A ticket for reckless driving.
My son made the best of his situation, and went on to graduate from UC Berkeley School of Law and is a California resident. Still he dreams of the day when he can get out of his wheelchair and walk while having his healthy body restored.
I have followed the research into curing paralysis very carefully since my son’s injury. The funding provided by the Roman Reed Act has had a significant impact in helping to develop promising therapies, one of which has just gone to clinical trials. In these hard economic times, research dollars are compromised. And yet there could be no greater investment in our future than to restore productive lives to those living with spinal cord injuries and other neurological impairments. As things stand now, the cost to society in health care dollars and lost productivity is enormous.
With AB 190 we have an opportunity to provide funding for the Roman Reed Act with non-tax dollars. For the sake of my son’s future, and so many hundreds of thousands like him, please make it your priority to pass this bill.
Marilyn Smith, Executive Director
Unite 2 Fight Paralysis
P.S. From Don: It is not too late to send a brief e-mail of support on behalf of AB 190. Justt tell them that AB 190 is a reasonable solution to a terrible problem and they should vote for it. Add more if you want, but that is the important part. (And feel free to ask friends and neighbors to do the same!)
Emails should go to:
firstname.lastname@example.org (aide for Committee Chair Tom Ammiano,
Heidi.email@example.com (aide for Committee Vice Chair Steve Knight
firstname.lastname@example.org (aide for Jerry Hill)
email@example.com (aide for Gilbert Cedillo)
firstname.lastname@example.org (aide for Holly Mitchell)
email@example.com (aide for Curt Hagman)
Sandra.firstname.lastname@example.org (aide for Nancy Skinner)
-and a copy to me and Bob Wieckowski’s aide in charge of the effort Jeff.email@example.com.
The Public Safety Committee will hear the bill next Tuesday, April 26th, at 9:30. Join us!
Don C. Reed, Citizen-sponsor, Roman Reed Spinal Cord Injury Research Act