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Archive for April, 2011

ONE SMALL COMMITTEE, ONE GIANT LEAP FOR MANKIND:  Cure Research Bill Advances!

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.

 

 

 

ONE SMALL COMMITTEE, ONE GIANT LEAP FOR MANKIND:  Cure Research Bill Advances!

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.

 

 

 

Read Full Post »

 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 $3 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 $14.6 million in state funds, which gathered in an additional $63.8 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 $3 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.

Sincerely,

Marilyn Smith


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:
misa.yokoi-shelton@asm.ca.gov (aide for Committee Chair Tom Ammiano,
Heidi.jensen@asm.ca.gov (aide for Committee Vice Chair Steve Knight
gibran.maciel@asm.ca.gov (aide for Jerry Hill)
luis.d.quinonez@asm.ca.gov (aide for Gilbert Cedillo)
tiffany.jones@asm.ca.gov (aide for Holly Mitchell)
victoria.stewart@asm.ca.gov  (aide for Curt Hagman)
Sandra.trevino@asm.ca.gov (aide for Nancy Skinner)
-and a copy to me and Bob Wieckowski’s aide in charge of the effort Jeff.barbosa@asm.ca.gov
 
The Public Safety Committee will hear the bill next Tuesday, April 26th, at 9:30. Join us!
 
Thank you,
 
Don C. Reed, Citizen-sponsor, Roman Reed Spinal Cord Injury Research Act

Read Full Post »

OF SHARKS AND CLONING: Minnesota and the Politics of fear  

By Don C. Reed

When the movie SOUL SURFER came out, I was a little concerned for the safety of sharks.

As a former professional scuba diver for Marine World (1972-87) I swam with sharks on a near-daily basis, and know them to be useful citizens of the sea. By eating the sick fish, sharks prevent the spread of disease, and keep the ocean healthy.

But when the Stephen Spielberg masterpiece JAWS was released, people were so terrified of sharks that they organized “shark derbies” to slaughter as many of the oceanic predators as possible. This was devastating to the ocean, and wherever it was done, disease spread unchecked.

But this time– despite an appealing star, an inspirational true story of courage against all odds, and an actual shark attack– the mass panic and “revenge” slaughter of sharks did not happen. People saw and were moved by the movie, but they did not rush and kill sharks.

Perhaps this different outcome is because people know about sharks now. Like the freeway, the ocean can be dangerous, but it can also be lived with.

I met the author of JAWS, Peter Benchley, and asked him to write something beautiful about the ocean, since he had made so many millions out of making people afraid.

“I did,” he said, “It was a book called GIRL FROM THE SEA OF CORTES– and it did not sell.”

Fear sells.

Similarly, the fear of cloning has been used to sell political candidates, and their agendas. It worked once, but maybe not too often.

Cloning– or rather the fear of it– has been very good for Republican Sam Brownback.

The former Kansas Senator built his name recognition attacking cloning and embryonic stem cell research. Using a semi-scientific vocabulary provided by his friend Dr. David Prentice, Brownback whipped up a frenzy of anti-science fear, endlessly speechifying about cloning and embryonic stem cell research and killing young humans (which never existed)–and he rode the non-existent problem all the way to the Governor’s mansion.

Naturally such success will be copied, as Senator Michelle Fischbach of Minnesota is currently trying to do. She hopes to prohibit exactly the same form of stem cell research Brownback attacked.

Her bill would prohibit cloning today–both good and bad forms of it– and if she succeeds, what will come after that?  

First, let’s be clear what she wants to ban.

It is not just reproductive cloning, the never-achieved nightmare of trying to clone Uncle Frank or Aunt Gertrude. Nobody wants that.

She also wants to ban therapeutic cloning to make stem cells.  Our hope for this good kind of cloning is that  it may be able to provide healthy stem cells that the body will not reject– because they are made from the patient.

Here is how the stem cells are obtained.  

1.       A cotton swab is scraped across the inside of the patient’s mouth collecting skin cells.
2.       One of these cells is transferred into a human egg, like a woman may lose every month.
3.       Egg and skin cell are placed in salt water, and stimulated with a mild shock of electricity.
4.       Five to seven days go by.
5.       The microscopic egg is opened, and the stem cells are removed.

This is what opponents attack, calling it the murder of “young humans”.

Where? Show me one “young human” in the above process. There are none.   
The ingredients are not there. There is no sperm, no implantation in the womb–no womb at all—and no pregnancy.

Without a pregnancy, how can there be a baby? 

In California, fast becoming the world center of stem cell research, this form of research is 100% legal.    

But aren’t there are other kinds of cloning?

Gardeners clone plants: “cutting a slip” from a plant is cloning. Police may catch a criminal or free an innocent person by cloning DNA in crime scene analysis. Diabetics use injectable insulin which allows them to stay alive—and the making of that insulin involved the cloning of bacteria.

And one nightmare possibility which should never be allowed.

Reproductive cloning tries to do for people what was done to Dolly the cloned sheep. It would involve  making of the skin-cell blastocyst– but then implanting it into the woman’s uterus.

It would risk the lives of both mother and potential child. 

Reproductive cloning is as different from therapeutic cloning as lightning is different from the light bulb—in California the same law which allows SCNT also makes reproductive cloning a major crime.

Do reproductive cloning in California, and you will go to jail for ten years, and be fined a million dollars.

Any tool can be abused.  A hammer can be used to hit a neighbor on the head, or to build a house. Should we criminalize hammers because of the possibility that they might be used in a negative way?

Back to Minnesota. The Mayo Clinic and the University of Minnesota are world-renowned centers of excellence for medical research. Two outstanding stem cell researchers there are Meri Firpo and Dan Kaufman. Both are embryonic stem cell experts: Kaufman specializes on helping the body fight cancer, Firpo develops transplantation therapies for diabetes.  

Neither scientist is using SCNT. So why would they care if it was criminalized?

I emailed Dan Kaufman, and asked him just that. He responded:

“…it is important to keep all options available for future directions in stem cell research and therapies. While using SCNT for therapeutics has not yet been done for human cells, it has succeeded in animal models. This may be a viable option in the future. While we (researchers) would have no problem with a ban on reproductive cloning, these Minnesota bills aim to ban all “cloning” without distinguishing therapeutic cloning from reproductive cloning.”

In a recent interview, Dr.  Firpo approached it similarly:

“(The bill) won’t change any actual research that we’re doing now, but it might prevent me from doing research in the future that will allow me to cure diabetes.”
— “Researchers, biomedical industry fear ‘hidden agenda’ of human cloning bill, James Nord, MinnPost.com, March 18, 2011

And there is another reason for concern.

 This may be part of an attempt to block the entire field of embryonic stem cell research.

In 2009, the anti-abortion group run by Senator Fischbach’s husband (Minnesota Citizens Concerned for Life) successfully passed a two year ban on the research, signed into law by Republican Governor Tim Pawlenty, now running for President.

According to the group’s spokesperson, the Fischbach/Dettmer bill is step two.

“This bill takes the next logical step and prohibits cloning altogether, not just the funding of it with tax dollars,” (said) MCCL legislative associate Andrea Rau.”

And what is step three?

“We believe that this bill is a preliminary to another bill which will seek to ban the use of human embryonic stem cells and that really will be disruptive to a number of research programs…,” said Dr. Jonathan Slack, director of the University of Minnesota’s Stem Cell Institute…

“Dettmer, the bill’s House author, said he has no current plans to introduce legislation criminalizing embryonic stem cell research, but he left open that possibility, depending on public input…..”
–ibid, James Nord

Somatic cell nuclear transfer is supported by the American Medical Association (AMA), the National Academy of Sciences, the Coalition for the Advancement of Medical Research (CAMR), the Association of American Universities—and, to the best of my knowledge—every major scientific, medical, and educational organization which has taken a position on the issue.

Which major scientific, medical or educational organization supports either the Brownback or Fischbach bills, and their suppression of research?

I do not know of a single one.

Fischbach knows (she has been publicly told) that her bill would ban both kinds of cloning: one good, and one bad. She knows they are different; she intends to ban them both.

She and her husband Scott Fischbach (executive director of the religious group, Minnesota Citizens Concerned  for Life, or MCCL) are attacking the research  with no apparent regard for accuracy.

Here is her husband speaking.

“We’re going to find cures, and we’re going to find treatments,” he said, “But nobody’s going to get killed as we do it.”
— “Stakes are high in new debate over cloning”, Jenna Ross, StarTribune, March 30, 2011

First, I question Mr. Fischbach’s expertise. Who is the “We” in his “We’re going to find cures” declaration?   Is he a scientist? Has he raised money for stem cell research?

Mr. Fischbach is an anti-abortion activist. That does not qualify him as a stem cell research expert.

And who are the alleged people he refers to in the “nobody’s going to get killed” part of his statement?

Listen to the spokesperson for Mr. Fischbach’s group, MCCL Andrea Rau, describing SCNT.

“Once you have a human embryo, you know, if you were going to try to derive some kind of tissue, you would have to grow that embryo. If you wanted to grow a heart then, you’d have to grow the embryo  and have the whole thing grow, the whole body and then harvest the heart…that’s the only thing you could do with it if you were trying to get a heart from it.” (emphasis added)
–“’Cloning’ ban proponents muddle facts in stem cell debate”, Andy Birkey, Minnesota Independent, March 28, 2011

This is staggeringly false. She is literally saying that the scientists want to grow a baby and cut out its heart.  Is that just gross ignorance, or deliberate duplicity?  

And here is Senator Fischbach herself, echoing the misinformation.

“…either you clone a human to make a baby and implant it into a woman or you clone a baby to use it in experiments.” Fischbach is the wife of Scott Fischbach, the executive director of Minnesota Citizens Concerned for Life, a group that is working to draft and pass the bill.”
—Andy Birkey, “Bill to Criminalize embryonic stem cell research…” Minnesota Independent, 03.18.11

Fortunately, Minnesota is America, and the overwhelming majority of Americans support embryonic stem cell research.

Politicians can read polls too.

Therefore, the same people who are trying to shut down stem cell research are simultaneously trying frantically to deny it. It would be almost funny—unless they get away with it.

Listen:
 “A spokesperson for Senator Michelle Fischbach’s office says the proposed human cloning ban only addresses the creation of embryos, not stem cells or research with stem cells.”—  (emphasis added)
–“Mother worries over stem cell research bill”, University of MN KSTP  4/9/2011

But the bill states: “It is unlawful…to….receive for any purpose an embryo produced by human cloning or any product derived from such an embryo…” (emphasis added).
–“Legislators seek to make embryonic stem cell research a felony”—Andy Birkey, Minnesota Independent, 4/09.2011

Stem cells are the “product derived” from SCNT. Stem cells are the reason for SCNT.

If Ms. Fischbach’s spokesperson is correct, however, the Senator would have no problem with an amendment stating that nothing in her bill  affect stem cell research—but when offered that amendment, and another to separate the two kinds of cloning, she instantly said no to both. 

There may be a political reason behind all this.

By treating a 5-day-old blastocyst as if it was a human being, the Fischbachs may be attempting to impose a “personhood” definition of life into law.

If a microscopic bit of tissue in a Petri can be granted the full legal rights of a citizen, what does that do to a woman’s reproductive freedoms?

The Fischbachs’ longterm goal is plainly to overthrow Roe V. Wade, the Supreme Court decision protecting a woman’s right to choose.

Roe V. Wade established viability as the standard of legal humanity. If a baby can live on its own, delivered from the mother’s womb, then it becomes a legal person.

But if “personhood” can be moved back to microscopic cells in a dish of salt water….

Personhood supporters (such as the Fischbachs appear to be) seem willing to allow millions to suffer needless agony, as long as they win their political point.

“It’s the agenda of (Minnesota Citizens Concerned for Life) and the pro-life movement to move the line of where human conception begins,” said (Senator Ron) Latz–—“Minnesota ban on tax-funded stem cell research passes House, Senate” Andy Birkey, 03.30.11, Minnesota Independent

What about the rest of Minnesota, like education, medicine, and business—what do they think about the Fischbach bill?

 “…the University of Minesota, the Mayo Clinic, and the BioBusiness Alliance of Minnesota are recommending against (Fischbach’s bill)’s passage. When it comes to scientific, medical and business acumen, it’s hard to name a more powerful trio of voices…”
–“Cloning ban will force many assets out of state”—Times Editorial Board, http://www.sctimes.com, March 29,2011

Is the research itself worth fighting for? Nobody can predict the future.

But listen to the late Republican President Gerald Ford:

“therapeutic cloning, more precisely known as somatic cell nuclear transfer…holds limitless potential to improve or extend life for 130 million Americans now suffering from some chronic or debilitating condition.  …a ban on all cloning…is slamming the door to lifesaving cures and treatments merely because they are new.

“… 40 Nobel laureates warned that such legislation “would foreclose the legitimate use of nuclear transplantation… and impede progress against some of the most debilitating diseases known to man.

“During my Presidency, similar questions were raised about research into recombinant DNA….A quarter century later, would anyone turn back the clock? Would anyone discard vaccines traceable to recombinant DNA research?”

–“Curing, not cloning”, Gerald R. Ford, Washington Post, June 5, 2002

Or former President Jimmy Carter, speaking about the anti-SCNT bill earlier shoved through the Republican-dominated House of Representatives, without a single public hearing…

“To President George W. Bush,

“I have learned of the Brownback-Landrieu Senate Bill and H.R.  2505 in the House of Representatives, both of which propose criminalizing all cloning. If they are passed as written, these pieces of legislation would mean a serious setback to medical research.

“One of the great scientific accomplishments of our time, therapeutic cloning, or nuclear transplantation, presents promising new opportunities for the treatment of many serious illnesses and injuries that have long plagued the world. These include heart disease, Parkinson’s, and spinal cord injury just to name a few.

“Though I fully support banning reproductive cloning, I strongly oppose any restrictions on therapeutic cloning….

Sincerely,

Jimmy Carter

And First Lady Nancy Reagan, in an open letter to Senator Orrin Hatch of Utah:

“Dear Orrin,

As you may know, Ronnie will observe his ninety-second birthday soon. In earlier times, we would have been able to celebrate that day with great joy and wonderful memories of our life together. Now, while I can draw strength from these memories, I do it alone, as Ronnie struggles in a world unknown to me or the scientists who devote their lives to Alzheimer’s research. Because of this, I am determined to do what I can to save other families from this pain.

“I’m writing, therefore, to offer my support for stem cell research and to tell you I’m in favor of new legislation to allow the ethical use of therapeutic cloning. Like you, I support a complete ban on reproductive cloning. However, I believe that embryonic stem cell research, under appropriate guidelines, may provide our scientists with many answers that are now beyond our grasp.

Orrin, there are so many diseases that can be cured, or at least helped, that we can’t turn our back on this. We’ve lost so much time already. I can’t bear to lose any more.”

–Office of Nancy Reagan  January 29, 2003

It is to be hoped that Minnesota Governor Mark Dayton (D) will use his veto power to block the Fischbach/Dettmer anti-stem cell research legislation, whether brought as separate legislation, or imbedded in another law.

Only knowledge and determination can block the politics of fear.

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important bill (AB 190) at Sacramento hearing this Tuesday—emails needed!

Dear Friend of Paralysis Cure:

If you come to the California stem cell program meetings (and you should!) you probably know me, Don Reed, the gray-haired patient advocate, usually sitting in the back of the room taking notes.

My son Roman Reed was paralyzed in a college football accident in 1994, and I have been working for cure research funding ever since. I served on board of directors of the campaign to pass Proposition 71, and have been a part of virtually all stem cell or biomedical support legislations, local, out-of-state or national. I am currently Vice-President for Public Policy for Americans for Cures Foundation.

A law named after my son, the Roman Reed Spinal Cord Injury Research Act, funded $14.6 million in California research, as well as attracting $63.8 million in add-on grants from the NIH and other sources.

Some of the projects we funded have changed the biomedical field. Geron’s human trials for spinal cord injury began with a Roman Reed grant to Dr. Hans Keirstead, now of California Stem Cells, Inc. A cell-sorting device by Dr. Ed Monuki was developed and made small enough to fit in a Petri dish. 175 peer-edited published papers became pieces of the paralysis puzzle– and laid groundwork for startups.

Last year the funding was removed from the Roman Reed Act—this year we are trying to put it back– with a non-tax funding source.

AB 190 (Wieckowski, D-Fremont) would assess a $3 fine increase to reckless drivers. It is a reasonable way to fund spinal cord injury research, as car crash is a leading cause of the devastating condition.

AB 190 is endorsed by the California Health Institute, the UC system, the Christopher and Dana Reeve Foundation and other biomed-friendly organizations.

Would you send a brief e-mail of support on behalf of AB 190? Here are committee members.

Emails should go to:

misa.yokoi-shelton@asm.ca.gov (aide for Committee Chair Tom Ammiano,

Heidi.jensen@asm.ca.gov (aide for Committee Vice Chair Steve Knight

gibran.maciel@asm.ca.gov (aide for Jerry Hill)

luis.d.quinonez@asm.ca.gov (aide for Gilbert Cedillo)

tiffany.jones@asm.ca.gov (aide for Holly Mitchell)

victoria.stewart@asm.ca.gov  (aide for Curt Hagman)

Sandra.trevino@asm.ca.gov (aide for Nancy Skinner)

-and a copy to me and Bob Wieckowski’s aide in charge of the effort Jeff.barbosa@asm.ca.gov

The Public Safety Committee will hear the bill next Tuesday, April 26th, at 9:30. Join us!

Thank you,

Don C. Reed, Citizen-sponsor, Roman Reed Spinal Cord Injury Research Act

Read Full Post »

Friends of Biomedicine, Unite!

Re: bio-med important bill (AB 190) at Sacramento hearing next Tuesday—emails needed!

Dear Biomed Friend:

If you come to the California stem cell program meetings (and you should!) you probably know me, the gray-haired patient advocate, usually sitting in the back of the room taking notes.

My son Roman Reed was paralyzed in a college football accident in 1994, and I have been working for cure research funding ever since. I served on board of directors of the campaign to pass Proposition 71, and have been a part of virtually all stem cell or biomedical support legislations, local, out-of-state or national. I am currently Vice-President for Public Policy for Americans for Cures Foundation.

A law named after my son, the Roman Reed Spinal Cord Injury Research Act, funded $14.6 million in California research, as well as attracting $63.8 million in add-on grants from the NIH and other sources.

Some of the projects we funded have changed the biomedical field. Geron’s human trials for spinal cord injury began with a Roman Reed grant to Dr. Hans Keirstead, now of California Stem Cells, Inc. A cell-sorting device by Dr. Ed Monuki was developed and made small enough to fit in a Petri dish. 175 peer-edited published papers became pieces of the paralysis puzzle– and laid groundwork for startups.

Last year the funding was removed from the Roman Reed Act—this year we are trying to put it back– with a non-tax funding source.

AB 190 (Wieckowski, D-Fremont) would assess a $3 fine increase to reckless drivers. It is a reasonable way to fund spinal cord injury research, as car crash is a leading cause of the devastating condition.

AB 190 is endorsed by the California Health Institute, the UC system, the Christopher and Dana Reeve Foundation and other biomed-friendly organizations.

Would you send a brief e-mail of support on behalf of AB 190? Here are committee members.

Emails should go to:

misa.yokoi-shelton@asm.ca.gov (aide for Committee Chair Tom Ammiano,

Heidi.jensen@asm.ca.gov (aide for Committee Vice Chair Steve Knight

gibran.maciel@asm.ca.gov (aide for Jerry Hill)

luis.d.quinonez@asm.ca.gov (aide for Gilbert Cedillo)

tiffany.jones@asm.ca.gov (aide for Holly Mitchell)

victoria.stewart@asm.ca.gov  (aide for Curt Hagman)

Sandra.trevino@asm.ca.gov (aide for Nancy Skinner)

-and a copy to me and Bob Wieckowski’s aide in charge of the effort Jeff.barbosa@asm.ca.gov

The Public Safety Committee will hear the bill next Tuesday, April 26th, at 9:30. Join us!

Thank you,

Don C. Reed

Citizen-sponsor, Roman Reed Spinal Cord Injury Research Act

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WHY CALIFORNIA REPUBLICANS (and Democrats)SHOULD  SUPPORT AB 190
(Wieckowski, D-Fremont)

By Don C. Reed

AB 190 is a creative funding mechanism for the California spinal cord injury research program—which virtually ALL Republican legislators
(and Democrats too) have supported for over a decade.

California’s spinal cord injury research program was
established by the Roman Reed Spinal Cord Injury Research Act of 1999, named
after my paralyzed son. Small but effective, “Roman’s law” has been twice
renewed by near-unanimous majorities. 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 UC Irvine.

Times being what they are, however, there is no tax money
for it.

AB 190, a non-tax measure, would provide funding to continue
the successful program.

Here are five reasons why AB 190 should be approved.

1.      AB 190 is fiscally prudent, with zero tax impact; the
spinal cord injury research program it supports will be funded by a modest ($3)
fine on traffic violations, similar to state programs in Kentucky, South
Carolina, and other states. This is an appropriate nexus of funding, because
car crash is a major cause of spinal cord injury paralysis.

2.      AB 190 is NOT “another stem cell program”. Of 151 projects funded in the ten years of the program’s existence, only nine (9)
involved stem cells:  five adult, four embryonic (using President Bush’s approved stem cell lines).  Since 2008, no stem
cell projects have been funded.

3.      AB 190 supports a research program that  is revenue positive: for its
investment of $14.6 million dollars over ten years, a return of nearly $64
million ($63, 867, 216) was realized in add-on grants from the National
Institutes of Health and other sources: new money for California.

4.      AB 190 strongly supports biomedicine, one of the
mainstays of the modern California economy, already our number two industry,
and vital to our state’s recovery.

5.      Even the smallest improvement in a paralyzed person’s
life benefits taxpayers. Due to the staggering costs of paralysis (averaging
$775,000 in the first year alone) 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.

Important: a misunderstanding has arisen that AB 190
funds would go to the Roman Reed Foundation. This is not correct. The Roman
Reed Foundation is a private entity which raises funds for paralysis research,
primarily through sporting events.  It has no connection to Assembly Bill 190.

Want to Help? Send a FAX to two Republicans on the Public Safety Committee, which will be hearing the bill, probably Tuesday.

Chairman Steve Knight: FAX 916-319-2136

Assemblymember Curt Hagman: FAX 916-319-2160

For more information and the other committee members, look at the previous couple issues of this blog.

And thank you!

 

 

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RELIGIOUS RIGHT ATTACKS PARALYSIS RESEARCH BILL

By Don C. Reed

The Family Research Council (FRC) is perhaps the most powerful lobbying group of the Religious Right. Massively funded, The FRC uses its multi-million dollar annual budget to campaign against environmentalism, gay rights, women’s reproductive freedoms, taxation (especially taxation!) and embryonic stem cell research.

The Family Research Council also pays the salary of Dr. David Prentice, famous for his endless propaganda against embryonic stem cell research.

And it just attacked the honor of my paralyzed son.

This from the FRC’s April 4, 2011 action alert.

“FRC Action Alert: CA:…Legislation: AB 190—would impose an added penalty of $3 for traffic violations TO BE GIVEN TO THE ROMAN REED SPINAL CORD INJURY FOUNDATION…(emphasis added). www.frcaction.org/index.cfm?i=AL11D05&f=AL11D05

They then went on to cite a lengthy piece from another Religious Right group (lifenews.com) attacking embryonic stem cell research, the California stem cell program and much else.

http://www.lifenews.com/2011/04/02/california-spinal-cord-injury-bill-promotes-embryonic-research/

Most of that is pure opinion, to which they have a right.

But to imply that AB 190—a state law– would benefit my son’s private foundation?

The Roman Reed Foundation itself is quite real; it is a 501 c-3 foundation, putting on sporting events to raise funds for paralysis research. For example, it recently put on a golf tournament to benefit Stanford’s spinal cord program.

But neither Roman nor his foundation have any financial connection to Assembly Bill 190.

AB 190 would continue the funding of a highly-respected state program, developed by a California law called the Roman Reed Spinal Cord Injury Research Act of 1999. Twice renewed by near-unanimous votes of the state legislature, the program is administered by the University of California (UC) system.

AB 190 specifically states:

 “…Existing law authorizes the University of California to establish a spinal cord injury research fund, independent of the State Treasury, to accept public and private funds for spinal cord injury research programs and grants. This bill would impose an additional penalty of $3 to be imposed upon every conviction for a violation of state and local traffic laws, as specified, except for offenses related to parking. The bill would require the penalty to be deposited with the county treasurer and distributed each month for transfer to the spinal cord injury research fund created within the University of California.”

http://www.leginfo.ca.gov/pub/11-12/bill/asm/ab_0151-0200/ab_190_bill_20110315_amended_asm_v98.html

The words “Roman Reed Foundation” do not even occur in the text.

If they simply made a mistake, the FRC should issue a public retraction.  

Otherwise, it seems to me they are guilty of perpetuating a deliberate misrepresentation of Assembly Bill 190, a gross and damaging falsehood about the Roman Reed Foundation, and a scurrilous attack on the honor of my son.

It is not clear to me if the Family Research Council made the attack first, or LifeNews.com.

Below is a copy of my response to LifeNews.com, which spread the false statement widely.

http://www.lifenews.com/2011/04/02/california-spinal-cord-injury-bill-promotes-embryonic-research/

Dear LifeNews.com:

I am the father of Roman Reed, the paralyzed young man who inspired the Roman Reed Spinal Cord Injury Research Act of 1999, twice renewed by the California legislature.

Your article http://www.lifenews.com/2011/04/02/california-spinal-cord-injury-bill-promotes-embryonic-research/ contains a significant error, which you should correct.
You state that: “Funds acquired by AB 190 will be used by the Roman Reed Spinal Cord Injury Foundation.”

That is false. The Roman Reed Foundation will not receive any funds from Assembly Bill 190. The Roman Reed Foundation is a private foundation which raises funds for paralysis cure research by putting on sports events. 

Your differences are with California’s decade-long spinal cord injury research program, which was established by the law my son inspired. If you want to argue with California’s stance on stem cell research, that is your right.

But to state that public funds will be used by a private foundation is a serious charge, and potentially defamatory.

Please correct your error.

Thank you,

Don C. Reed

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ONE HOUR TO FIGHT FOR PARALYSIS CURE? Tuesday is crucial vote for AB 190.

By Don C. Reed

If California Assembly Bill 190 (Wieckowski, D-Fremont) passes the public safety committee, April 5, (tomorrow) the Roman Reed Spinal Cord Injury Research Act will be funded.

For every traffic ticket, AB 190 would give $3 to spinal cord injury (SCI) research for cure—that would be roughly $11 million a year. My paralyzed son Roman will have a chance to walk again.

Make it happen. Give me one hour of your time.

To pass the committee, we need four votes. By my count we have three champions already—Gilbert Cedillo, Holly Mitchell, and Nancy Skinner—we need one more. The two Republicans—Steve Knight and Curt Hagman—have listened politely but not signaled support. If you know them, contact them*, please. But our best hope for that one crucial vote?

Please call, FAX, or e-mail the following 2 people:

Jerry Hill (FAX 916-319-2119, PHONE 916-319-2019) for his crucial yes vote on AB 190, we cannot do it without his support: fax him, plus send an email to his legislative aide: Gibran.maciel@asm.ca.gov.

Committee Chair Tom Ammiano (FAX-916-319-2113, PHONE 916-319-2013). plus emails to his legislative aide: misa.yokoi-shelton@asm.ca.gov   

Just say: please support AB 190, the sensible solution to funding paralysis cure.

AND LOOK IN YOUR PHONE BOOK FOR SOMEONE WHO MIGHT EMAIL THEM TOO.   

*The two Republicans on the committee are:

1. Curt Hagman (phone: 916-319-2060, FAX: 916-319-2160, email his legislative director, victoria.stewart@asm.ca.gov)

2. Steve Knight (phone: 916-319-2036, FAX: 916-319-2136, legislative direct email, heidi.jensen@asm.ca.gov)

With your help, TODAY, we can make the difference so many thousands of advocates have worked toward for so many years. Send your two FAXes, send your two E-mails—and contact as many as friends as you can think of. Everything depends on you, me, and today.

We have only today: tomorrow is the vote.

P.S. for more information, including a sample letter, description of the program, and main talking points, go to: www.stemcellbattles.com.  And thank you, very much.

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THREE DAYS TO PARALYSIS CURE:  this weekend and Monday for AB 190

By Don C. Reed

For 17 years, I have worked to find a cure for paralysis—and it is all coming down to three days—today, Sunday, and Monday. What we do in these next three days will determine the success or failure of paralysis cure in your lifetime and mine.

Tuesday, April 5th,  is the vote. If Assembly Bill 190 (Wieckowski, D-Fremont) passes the public safety committee, (we need 4 of 7 votes to pass) the Roman Reed Spinal Cord Injury Research Act will be funded– and I believe I will see my son walk again.

If the vote fails, I will still keep fighting, as will Roman—but it will most likely be for the next generation.

Here’s why.

AB 190 will fund the Roman Reed program, $3 per traffic ticket to curing spinal cord injury (SCI) research for cure. That targeted money– $11 million year—will attract matching funds and add-on grants from the National Institutes of Health (NIH) and other sources, as it has always done.

The California stem cell program will of course follow the research closely. Any portion of the cure which may have to do with stem cells will get their full attention; that is what they do.

The RR Act funds primarily the non-stem cell stuff. (Only 3% of our funding has gone to stem cells, see below for more info.)

RR Act plus national funding plus California stem cell program plus private investment when cure becomes a product—that is the perfect storm of cure.

But it all depends on AB 190.

Help us make it happen. Give me your weekend—you will never spend your time more usefully.

A committee of seven: we need four votes. By my count we have three—Cedillo, Mitchell, and Skinner—we need one more. The two Republicans—Knight and Hagman—have not signaled any signs of support. If you know them, contact them, can’t hurt. But right now I count them neutral or negative—and we need four positive votes.

This weekend we want everyone to contact 2 people:

1. Jerry Hill (FAX 916-319-2119, PHONE 916-319-2019) for his crucial yes vote on AB 190, we cannot do it without his support: fax him, plus send an email to his chief legislative aide: Gibran.maciel@asm.ca.gov.

2. Tom Ammiano (FAX-916-319-2113, PHONE 916-319-2013). plus emails to his legislative aide: misa.yokoi-shelton@asm.ca.gov  We need him to either vote for us, or be neutral: as chair, if he opposes the bill, one committee member will vote against us. But if he stays neutral, that person will vote for us. 

Jerry Hill is the key vote. With him, we win. Without him, we lose.

If you have contacted him once, please do so again.

AND– THEN GO THROUGH YOUR PHONE BOOK FOR FRIENDS WHO MIGHT DO THE SAME.

Who do you know that would send an email– as a personal favor to you?

Have them call Jerry Hill too.

We have today, tomorrow and Monday—will you spend a couple hours doing emails something that could be spectacularly effective in the cause paralysis cure?

With your help, THIS WEEKEND, we can make the difference so many thousands of advocates have worked toward for so many years.

Send your two FAXes, send your two E-mails—and contact as many as friends as you can think of.

Everything depends on you, me, and the next three days.

P.S. As this is written, Roman (in his new second-hand van to replace the crashed older one) is driving down the coast to do an interview, to try to spread the word about AB 190.

Below is a sample letter, and a description of the program, and five main points. 

 SAMPLE LETTER:

Dear Assemblymember:

I urge you to support Assembly Bill 190, (Wieckowski, D-Fremont) which would fund the Roman Reed Spinal Cord Injury Research Act   through a small ($3) fine for reckless driving, cause of much paralysis in our state. There is no tax impact.

The problem is huge: California is home to an estimated 650,000 individuals suffering paralysis. As the condition is staggeringly expensive (quadriplegics face lifetime medical costs of three to five million dollars each, most turn to the state for help, with Medi-Cal and Medicare. Reduction of such costs helps everyone.

Revenue-positive, the RR Act has attracted funding from out of state amounting to more than four times its costs:  a ten-year investment of $14.6 million has brought in $63.8 million in add-on grants from the National Institutes of Health and other sources, new money for our state.

The Roman Reed Program funds projects to reduce injury severity and promote recovery of function after spinal cord injury through a broad range of interventions.  Importantly, we do NOT duplicate the California stem cell program. Only a small percentage (less than 3%) of the therapies explored over the 10 year history of the program involve stem cells.  

One major focus is on early intervention to reduce secondary degeneration.  Like heart attack and stroke, a spinal cord injury causes progressive damage that can be prevented, and reduce the burden of disability.   (In the days and weeks after the accident, the body’s immune system fights back in a “secondary wave of injury”, attacking itself, literally chewing into the spinal column, often doubling the original damage with accompanying loss of function. Reducing that secondary injury could mean the difference between walking and a wheelchair.)

 Another major research focus is on regeneration of the long connections of the spinal cord.  Damage to these connections causes  loss of  bowel, bladder, and sexual function, the ability to breathe (for people like Christopher Reeve) as well as loss of the capacity to feel touch.  Regeneration of connections is NOT addressed by stem cell therapies.  

Research supported by the Roman Reed Program promotes recovery through technological advances such as brain/computer interfaces, and biomechanical innovations including robotics.  One such project involves a helmet and an electronic glove: the patient’s brain waves control an implanted mechanical grip, returning partial use of the hand.   These therapies will almost certainly be important for other neurological disorders including stroke, traumatic brain injury including the injuries suffered by our troops, and neurodegenerative diseases like Alzheimer’s Disease.

Please support Assembly Bill 190. In these grim times, it is a bright light of hope, one we can ill afford to extinguish

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BRIEF DESCRIPTION OF ROMAN REED ACT, to  be funded by AB 190.

The Roman Reed Spinal Cord Injury Research Act: AB750/AB1794/AB190

Since its inception in 2000, the Roman Reed Program has provided $14.6 million for spinal cord injury research in California. This seed funding attracted add-on grants and other additional funding of $63,867,216 from the National Institutes of Health and other out-of-state sources, creating new jobs. It was twice renewed by near-unanimous votes of the Assembly and Senate.

Spinal cord injury causes a significant drain on state resources: an estimated five million six hundred thousand Americans suffer some form of paralysis, and 1,275,000 live with a catastrophic spinal cord injury. Financial costs are devastating.  Medical costs during the first year after a spinal cord injury are approximately $775,000, and as much as three million dollars over the life of a quadriplegic, which exhausts insurance caps.  Consequently, almost all people with a spinal cord injury end up on Medical and Medicare.  Improving function and health of people with SCI will reduce this financial burden to the state.

The Program is run by the University of California system and directed by Oswald Steward at the Reeve-Irvine Research Center at UC Irvine.  The Program provides small grants (seed funding) for California scientists and a core laboratory for spinal cord injury research at the Reeve-Irvine Research Center.

1) Research grants are determined by a panel of out-of-state experts to preclude conflicts of interest. Of a total 289 applications, 129 were awarded grants totaling $11,795,292. Additionally, 68 fellowships were awarded to graduate students working on spinal cord injury for an aggregate cost of $1,607,487. These grants achieved efficient leveraging, resulting in 71 new grants  from NIH and other sources, with a total $63,867,216 in new funding brought into California.

2) The Roman Reed Core Laboratory, a 6,000 square foot lab at UC Irvine, provides state of the art equipment, animal facilities, and trained personnel: where new scientists can learn, and established experts can work .The lab was dedicated on March 1, 2002, in a ceremony marked in the United States Congressional Record. The lab has hosted both individual projects (24) and collaborative efforts (18) as a central hub of spinal cord injury/nerve repair research.

Targets of funded research: develop neuroprotective interventions to reduce the wave of secondary that occurs in the hours and days following a spinal cord injury; restore bowel and bladder control; reduce chronic pain;  restore sexual function; prevent life-threatening blood pressure irregularities;  restore  myelin insulation around damaged nerves; prevent  formation of the spinal scar, which blocks nerve messages between brain and body; replace missing nerve cells;  implant bio-engineered frameworks to bridge the gap in the damaged spine; develop neurotrophins (nerve fertilizer) and other interventions to promote nerve re-growth; reduce bone-loss; test FDA-approved medications which may have an SCI application, and develop new activity-based therapies to improve function and overall health.

Results: 175 peer-reviewed publications.  Research on activity-based therapies led to new therapies which are a sea change for people with chronic spinal cord injury.  These therapies improve quality of life, reduce secondary health complications, and save the state money due to reduced health care costs.  Other discoveries supported by the program are in the pipeline toward translation including:  1) the world’s first clinical trial for stem cells for spinal cord injury; 2) a treatment initially developed for spinal cord injury is in clinical trials for inflammatory bowel disease; 3) new surgical techniques have been developed to treat people with nerve injuries.  

MAIN POINTS IN BRIEF

  1. AB 190 is fiscally responsible: the Roman Reed Spinal Cord Injury Research Act has spent $14.6 million of the taxpayers’ money—which investment brought in additional funding of $63.8 million in add-on grants from the National Institutes of health and other sources—new money for California. How many programs bring in four times as much money as they spend?

2. The funding mechanism ($3 add-on to reckless driving violations) is appropriate, as car crash is the cause of an estimated 46% of all spinal cord injuries, and even more (56%) of child injuries. This zero-tax mechanism penalizes no one but lawbreakers, who put everyone at risk with their bad driving choices.

3. Spinal cord injury is especially devastating for the poor, who cannot afford to hire an attendant to care for their loved ones. What help they get must come from the family, and inevitably involves already overburdened governmental services like Medi-cal and Medicare.

4. The Roman Reed program is a proven success. From the famous rats that walked again (featured on 60 Minutes), to 175 published papers in peer-reviewed journals, to new methods of using robotics, to much more.

5.  The need is immense. Paralysis affects 5.6 million Americans, 650,000 of whom live in California. Many suffer chronic pain, bowel and bladder problems, life-threatening blood pressure irregularity, skin break down—and family breakup from the endless stress. One paralyzed person may face $3-5 million in lifetime medical costs, $775,000 in the first year alone. As few can afford such expenses, most paralyzed Californians end up on Medi-Cal or Medicare, which greatly increases the taxpayers’ costs.

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