Vote on AB 190 to be held on April 26 - Need letters of support sent now!

[IMHopeful]

From our newsletter -

Spring is in the air, and with it comes renewed energy, passion and commitment in the quest to cure paralysis. Appropriately, we have a golden opportunity in the state of California to help enact a bill that will restore funding to the Roman Reed Spinal Cord Injury Research Act.

The Roman Reed Act has already directly funded $14.6 million in research and attracted $63.8 million in add-on NIH grants. Sadly the funding stopped in 2010, but thanks to the efforts of some of our community's strongest advocates, we have a chance to get it restored.

AB 190 would assess a $3 fine increase to reckless drivers, with the proceeds going to fund the Roman Reed Act. The bill is scheduled for a hearing next Tuesday, and we are joining our friends Don Reed and Karen Miner in asking that everyone please write to the following legislative aides expressing your support for the bill.

For more information and a sample letter, click here.

If you or a loved one has a spinal cord injury, be sure to include this personal connection in your letter (s). Note that email addresses are for the aides, but names in bold refer to legislators.

[Lizbv]

Its too bad that the Religious Right is spreading false information about this bill saying the money collected will go to the Foundation vs Research.

[Jim]

Please take the time to do this, critical research funding hangs in the balance.

[IMHopeful]

This isn't just any lab. Here are the researchers this fund supports.

This community can't afford to have this bill fail. This lab is critical to advancing a cure for SCI. Definitely worth your time! Advocates in California have already done the lion's share of the work on this. You just need to show your support by sending some emails.

Faculty of the RIRC

Oswald Steward, Ph.D.
osteward@uci.edu Oswald Steward, Ph.D.
Director & Professor, Reeve-Irvine Research Center Department:
Professor, Departments of Anatomy and Neurobiology, Neurobiology and Behavior and Neurosurgery Description:
Dr. Steward's research focuses on how nerve cells create and maintain their connections with each other, how these "synapses" are modified by experience and injury, and what genes play a role in nerve cell regeneration, growth and function. A long-standing interest is in the mechanisms of mRNA sorting and transport in neurons, especially the targeting of mRNA to synaptic sites on dendrites.


Aileen Anderson, Ph.D.
aja@uci.edu
Aileen Anderson, Ph.D.
Associate Professor, Reeve-Irvine Research Center Department:
Associate Professor, Departments of Physical Medicine and Rehabilitation, Anatomy and Neurobiology and Sue & Bill Gross Stem Cell Center Description:
Dr. Aileen Anderson investigates the role of inflammatory mechanisms in degeneration and regeneration in the injured central nervous system (CNS), in particular the spinal cord. Specifically, she focuses on a system that receives little attention, the complement system. Complement is a principal driver for multiple inflammatory mechanisms, and in recent studies, Dr. Anderson's lab has shown is activated after spinal cord injury.


Brian Cummings, Ph.D.
cummings@uci.edu
Brian Cummings, Ph.D.
Associate Professor, Reeve-Irvine Research Center Department:
Associate Professor, Departments of Physical Medicine and Rehabilitation, Anatomy and Neurobiology and Sue & Bill Gross Stem Cell Center Description:
Dr. Cummings investigates the mechanisms of recovery mediated by human stem cell transplantation after spinal cord injury. Neurodegeneration and regeneration represent critical basic science arenas for understanding basic biology as well as therapeutic targets for functional recovery. Thus, his lab is interested in factors affecting the survival, engraftment, migration, and differentiation of stem cells both in animal models and in cell culture models.


Hans Keirstead, Ph.D.
hansk@uci.edu
Hans Keirstead, Ph.D.
Associate Professor, Reeve-Irvine Research Center Department:
Associate Professor, Anatomy & Neurobiology Description:
The focus of the Keirstead laboratory is the development of strategies to limit degeneration and enhance regeneration after spinal cord injury, of both axons and myelin. The laboratory is investigating strategies to reduce or eliminate the post-traumatic enlargement of spinal cord injury sites that normally occurs after traumatic injury.


Suzy Kim, M.D.
suzyk@uci.edu
Suzy Kim, M.D.
Director, Clinical Spinal Injury Program and Scientific Liaison, Reeve-Irvine Research Center Department:
Medical Director, Spinal Cord Injury Acute Care Assistant Clinical Professor Dept. of Orthopaedic Surgery, Physical Medicine & Rehabilitation Description:
Joining the faculty at RIRC and UCI Medical Center, Dr. Kim brings her clinical expertise in treating newly spinal injured individuals and consulting their families throughout the continuum of care after spinal cord injury: initial hospitalization, inpatient and outpatient rehabilitation and community integration.

[GRAMMY]

We definately need some emails sent in right away on this!

[IMHopeful]

Emails should go to the aides of the following people -
Tom Ammiano - Committee Chair
misa.yokoi-shelton@asm.ca.gov

Steve Knight - Committee Vice Chair
Heidi.jensen@asm.ca.gov

Jerry Hill
gibran.maciel@asm.ca.gov

Gilbert Cedillo
luis.d.quinonez@asm.ca.gov

Holly Mitchell
tiffany.jones@asm.ca.gov

Curt Hagman
victoria.stewart@asm.ca.gov

Nancy Skinner
Sandra.trevino@asm.ca.gov


with copies to -

Don Reed
diverdonreed@pacbell.net

Jeff Barbosa - Aide in charge of the effort
Jeff.barbosa@asm.ca.gov

Sample letter -

Please support AB 190 which will provide $3.00 from every traffic ticket for spinal cord injury (SCI) research. Vehicular accidents are the leading cause of SCIs and consequently, this fine is tied to the very behaviors which often lead to these devastating, life changing injuries.

AB 190 is a creative funding mechanism for the California SCI research program. Virtually ALL Republican and Democratic legislators have supported it for over a decade. California’s SCI research program was established by the Roman Reed SCI Research Act of 1999. Small but effective, this program has been renewed twice by near unanimous votes. In 2004 it earned every legislator’s vote except one. In 2009 it received every vote on both sides of the aisle.

Administered by the University of California system, the Roman Reed program is headquartered at University of California-Irvine. Given the current economic times, there are no tax monies available to fund this ongoing, critical research. AB 190, a non-tax measure, would provide funding to continue this highly successful program.

Here are five reasons why AB 190 should be approved.

1. AB 190 is fiscally prudent, having zero tax impact. The SCI research program it supports, will be funded by a modest $3.00 fine on traffic violations.

2. AB 190 is NOT “another stem cell program”. Of 151 projects funded in the ten years of the program’s existence, only nine involved stem cells. Five projects used adult stem cells, four used embryonic stem cells from stem cell lines approved by President Bush. Since 2008, no stem cell projects have been funded.

3. AB 190 supports a research program that is revenue positive.This program has had an investment of $14.6 million dollars over ten years, with a return of $63,867,216 in add-on grants from the National Institutes of Health and other sources. As a result, this piece of legislation has brought important new dollars to California.

4. AB 190 strongly supports bio medicine, the number two industry in California and the mainstay of it's modern economy.

5. Due to the staggering costs of paralysis, even the smallest amount of recovery for a person surviving paralysis, benefits the taxpayers. Most patients end up on Medi-Cal and Medicare. Recovering the use of arm muscles for example,might allow a paralyzed person to drive, increasing his/her independence and lowering
attendant costs.

6. The international SCI community has found hope for recovery in the labs supported by this bill. At a time when the research is so promising, the financial and emotional impact this research has on the world is immeasurable.

Please support the promising SCI research in California and the paralysis community community it serves by passing AB 190 on April 26, 2011.

[GRAMMY]

Donna, This is surely one of the easiest projects for SCI advocates to participate in!
I was happy to take just a moment to send out the letter to provide funding for the best of the best. I hadn't realized before your post exactly which researchers would be funded through the measure. Thanks for taking the time to put the face on the situation.

[Jim]

By Don C. Reed

April 26, 2011. 9:30 AM. Sacramento Capitol. Room 126. Public Safety Committee

Roman Reed, Karen Miner, Mandy Miner, Bill Leeds, myself, and other friends of the research for cure struggle sat together in the jam-packed meeting room.

We were there to fight for a bill (AB 190: Wieckowski, D-Fremont) to fund the Roman Reed Spinal Cord Injury Research Act.

We would sit there most of the day. There were so many bills the legislators did not allow themselves a lunch recess. They just sat and worked and worked, and every so often somebody would get up and go to the bathroom, and then come back and work some more.

Every bill was vital to the people involved.

There were five Democrats on the committee, and two Republicans, vice chair Steve Knight and Assemblyman Curt Hagman. The GOP members voted as a bloc; if they disagreed, I missed it.

But though the gap between the two parties was sharp and clear, the courtesy was always there.

That was important. I had visited all the committee members’ offices several times apiece, and was always treated with courtesy.

Republican Vice Chair Knight’s legislative aide Heidi Jensen gave me a full half-hour of her time—which was above and beyond, when you think about it—because she probably knew all along that her leader would not support us.

I had a special reason to visit Ms. Jensen’s office the day before, and that was that a mistake had been made. We lost our old friend (he’s fine, just moved to a different job) legislative aide Ryan Spencer, the muscular power lifter (he holds an American record in weightlifting, a 705 deadlift), and during the transition a language error cropped up.

As I was re-reading the bill a couple days before the hearing, I found something shocking—most bills contain an “opt-out” provision, so that if a city or county objects strongly to a bill, they can choose not to participate. Our bill was just the opposite! It had language which amounted to an “opt-in” which would have been disastrous. To participate, cities and counties would have to pass special legislation—this would make it almost impossible to get any funding for the research.

The way the bill was written, Karen and Roman and I would have to approach each of California’s 58 counties, and request the opportunity to speak on behalf of the bill. It would be like fighting for a bill’s passage—58 times.

But, if we had to do it, we would. And maybe this could help gain Republican support? So I called up both the legislative aides, and told them about it, and both seemed interested.

But—it turned out to have been a typographical error.

So, the day before the vote, I visited the offices of Republicans Knight and Hagman.

Assemblyman Hagman’s aide (capitol director Victoria Stewart) was not available, this being crunch time at the Capitol, so I explained the mistake to the Secretary, who promised to pass it along.

I was able to catch Ms. Jensen, Vice-chair Knight’s aide, and I told her about the opt-out/opt-in situation.

She nodded, but then added that her leader would probably not be able to support us.

Stem cell issue?

Yes, she said.

I explained that while we had funded stem cell research, (four with Bush-approved embryonic stem cell lines, five with adult stem cells) that was only 9 out of 181 projects—and none since 2008.

I support stem cell research, no question. I do not see the microscopic dots-in-a-dish-of-salt water as human beings. They are never in a womb, how can they become children?

But even for a person opposed to stem cell research, the Roman Reed program should not offend. We focus primarily on all the other issues that must be dealt with for cure to happen, in addition to regenerative factors. We are the “everything else” part of the picture. Our 175 published research papers are like a library of what works and what doesn’t. Each experiment is a piece of the puzzle of cure.

She smiled, but shook her head.

Curt Hagman’s aide, Ms. Stuart, was polite, nothing more. She listened, nodded in acknowledgement of my arguments, and gave me no slightest hint of encouragement. No hopes there.

Honorable opponents, Hagman and Knight: but they would not support us.

So five Democrats, no problem, right?

Not necessarily.

Every Democrat in Sacramento is between a rock and a hard place right now.

They are in office because they want to help people—but they cannot raise taxes. If California was on fire, taxes could not be raised to buy fire hoses. This is because of Proposition 13’s requirement of a 2/3 majority for any tax increases at all, and the Republican pledge of no new taxes, ever.

Committee Chair Tom Ammiano (D-San Francisco) is one of the most progressive forces in California politics. But he objects to funding government programs by fees, which unfairly burden the poor.

But our funding mechanism was not a fee (which hits everybody), but a fine which affects only violators. We pointed out that spinal cord injury is often caused by car crash—but despite repeated visits with aides Curtis Notsinneh and Misa Yokoi-Shelton, we knew he still had reservations.

So would he vote against us? So highly respected is the chair, that one of the other votes we depended on (doesn’t matter which one) told us: if Ammiano said no, that was it.

We had to hold 4 votes: Skinner, Mitchell, Hill, and Cedillo. If we lost just one, the bill was dead.

I watched them in action as the day wore on. It occurred to me I knew them mainly through their aides. I hope they won’t mind if I at least mention a couple of their names, these individuals who work so hard behind the scenes.

Gilbert Cedillo, Hispanic intellectual, asked penetrating questions all day long. His aide was Luis Dario Quinonez, and like the man he worked for, he asked questions which showed he knew the legislation inside and out.

Assemblymember Nancy Skinner reminded me of Karen Miner, the wheelchair warrior who has been with our effort since it began. Both women are wisp-thin and elegant, physically like a breath of wind would knock them over—but a hurricane would not shake their convictions. Aide: Sandra Trevino.

Holly Mitchell is an African-American lady with a ferocious scowl—she reminded me of the teacher nobody would give trouble to—but when she smiled it warmed the room. A person would know exactly there they stood with Ms. Mitchell. Aide: Tiffany Jones

And Jerry Hill. A champion of biomedicine, and again with the same philosophical objections to our funding mechanism. His aide, Gibran Maciel, was visibly torn on the issue. He asked, could we win without his leader’s vote, and I said no—he punched his fist into his hand and walked around the room.

And so we waited, sitting through dozens of bills. I used the bathroom three times.

One of the bills was about immigrant rights. I perked up at that. Half of America used to be Mexico before the dividing line was moved, and we are all immigrants anyway, or descendants from them.

There was a long line of witnesses, people only allowed to state name and position (each bill was allowed only two speaking witnesses, two minutes each) and I found myself joining the line.

“My name is Don Reed, and I am married to an Hispanic woman who would shoot me if I did not support this bill,” I said, and then sat back down.

Roman looked at me, nodded, and then went and did the same, in honor of his Hispanic-American Mom.

And then at last it was our turn.

To my delight, the California Health Institute (CHI) sent their representative, Scott Allen! CHI represents California’s emerging biomedical industry. Their leader is Dr. David Gollaher, and the Sacramento office is chaired by Consuelo Hernandez, and I have knocked on their doors many times over the years, asking for assistance, and they always try to help. But I knew they had a major legislative challenge that day, and did not expect them to be able to attend.

Roman spoke, and for some reason, he completely left the speech he had prepared. Roman and I of course compare notes when writing our speeches so we don’t overlap, and I thought I knew what he was going to say, but no, not at all.

He talked about the children affected by paralysis. His two minutes were emotional and gut-wrenching.

When it was my turn I talked about the money that would be lost to our state, if our bill did not go forward. I mentioned that we had spent $14.6 million of California tax dollars—but attracted $63.8 million in funds from Washington, new money for the state.

But I cut myself off early, only using 60 seconds, so that the CHI representative would be able to speak—and he did, clear and strong, saying how biomedicine sprang from the seeds research planted.

We listened to the opposition. One person spoke from a group (I think) called California Public Defenders, and her main point was about traffic ticket add-ons as not a good way to fund government, a legitimate concern, but one which everyone had already considered in depth. No good change happens without a cost; if we can cure paralysis with money from bad drivers, it will be different, but good.

But the main opposition came from the Religious Right. A well-dressed individual, maybe 25, eloquent, very sure of himself, he started off talking about how government often makes programs just because it likes to make programs, and then he got into the embryonic vs. adult stem cell research debate.

He said his piece, and I endured it. I just kept my hands on the desk and looked straight ahead. I am sure it was as difficult for my opponent to have to listen to my words as it was for me to listen to his—that’s democracy—but Roman was not so calm. I listened to the sounds of his breathing, and knew he was just boiling mad, hearing the opposition talk about our bill and trash-talking the research.

Recently an article came out from the religious right which stated that the money from AB 190 would go to the Roman Reed Foundation—completely wrong. The Roman Reed Foundation is a private entity, with no connection to AB 190.

I wrote to the website which ran the piece and pointed out the error—and the next piece that came out did not contain that mistake.

I appreciate that. Democracy is a fragile thing, beautiful but breakable. If opposite sides can maintain a modicum of care and courtesy, that leaves the door open to someday work together.

When the opposition concluded, our legislative champion, Fremont’s Bob Wieckowski, responded. Bob is new on the job and I had no idea how he would be under the pressure of committee hearings.

But he responded with a cheerful clarity that acknowledged the objections raised by our opposition, and dealt with them. He had earlier spoken from prepared text, and the caring nature of the man came through.

He made me proud to be a Democrat.

And now there was nothing left: only the vote, up or down, yes, or no.

Chairman Ammiano (D)—abstained. (This was a gift—he did not try to tell the others how to vote!)

Hagman (R) –no.

Knight (R)-no

Skinner (D)—yes

Mitchell (D)-yes

Cedillo (D)-yes

Hill (D) -- yes

We had it, had the four votes we needed!

AB 190 was passed by the Committee on a 4-2 official vote.

Roman and Karen and Bill Leeds and I went outside and were happy.

And Roman said: “all the help we got, the thousands of emails back and forth, people all up and down the state and across the country in support—how are we going to thank all those people?”

To which Karen responded:

“Just pass the bill, that’s what matters.”

Now we move on to Appropriations.

Stay tuned, dear friends of research for cure.



Don C. Reed
Twitter: @diverdonreed
Sponsor, Roman Reed Spinal Cord Injury Research Act
co-chair, Californians for Cures
Vice President, Public Policy, Americans for Cures