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GOVERNOR BROWN VETOES PARALYSIS CURE RESEARCH BILL

By Don C. Reed

Unfortunately, Governor Jerry Brown has just vetoed Assembly Bill 714, (Wieckowski, D-Fremont) which would have restored one million dollars to the Roman Reed Spinal Cord Injury Research Act.

A mistake was made. The Governor has an avalanche of bills to decide, and he is only human.

But it was unquestionably an error.

California needs small research model bills, seed money to help new scientists just starting out, as well as established giants in the field, who may need the encouragement of a small grant to try something new.

In practical terms, “Roman’s Law”, inspired by my paralyzed son, was revenue-positive.

Of how many laws can it be said that they bring in more money than they cost?

California’s small paralysis research program cost only $15.1 million (over ten years) —and brought in $84 million in new money for the state. How many investments bring in more than five dollars for every one they cost?

More importantly, it brought cure closer for California’s 644,000 paralyzed children and adults. The results it produced were spectacular.

You’ve heard about the paralyzed rats that walked again, the success that made the paralyzed Superman Christopher Reeve say, “Oh, to be a rat!”

Those were our rats.

You heard about the incredible beginnings of advanced stem cell research to cure paralysis? Those were our projects, begun long before the magnificent Prop71 made California the stem cell capitol of the world.

Mostly, though we took the small non-stemcell steps that must be done, the “everything else” necessary for paralysis alleviation, rehabilitation, and improvement of quality of life.

We fought against the agony of chronic pain, against blood pressure irregularities that can kill, against pressure sores that can rot to the bone: and much more.

We turned nickels and dimes into million dollar progress.

But the recession hit, and those nickels and dimes were denied us. In 2010, the program was renewed—but without funding. So, we tried again.

In 2011, we tried for a traffic ticket add-on ($3 per ticket) to fund the research. The Assembly finance committee vetoed that, not liking the funding source.

In 2012, we tried for a smaller (one dollar per traffic ticket) increase, and won a narrow victory in both houses—but Governor Brown did not like our funding mechanism, and vetoed it, saying the research should be funded by the General Fund.

In 2013, this year, we had a roaring success in the legislature, passing both houses almost unanimously, passing the Assembly 68-3, and the Senate 39-0. Out of both houses, only three legislators voted against us.

Also, we altered our bill to meet Governor Brown’s objection to the previous bills, requesting that it be paid for from the General Fund.

Unfortunately, the Governor vetoed it again.

Paralyzed Americans—five and a half million of them, each as important to their families as my son is to me—lost another year of progress.

What was the reason for the veto? I do not know. As of this writing I have not seen the Governor’s veto message.

One speculation is that there was jealousy of the University of California, which has benefited from our program in the past. Our program is administered by the UC system, and the funding often goes to UC graduate students starved for research funds, who often cannot get it any other way. Some people thing we over-fund the California educational system; but as a former teacher, I definitely disagree—not to mention the UC system just took a billion dollar (Billion) cut.

A more likely possibility is that with the President’s Affordable Care Act under constant attack, it is natural for the fighters for health care to lose track of one small bill.

But there could not have been a more supportive Senate and Assembly.  California Republicans and Democrats came together on this issue, shaking hands across the aisle. If only Washington cooperated like Sacramento did on AB 714!

And now, what should we do? I only know one answer: what the coal miner said, when asked he could go down into the darkness of the mine six days a week, working in the choking cold and dust each day, not coming up until after the sun was gone. He said it was simple, just, “put one foot in front of the other.”

This will be no different.

Next year, the California Assembly and the Senate—and the Governor—will be asked once again to fund the Roman Reed Spinal Cord Injury Research Act.

We’ll do it next year and the year after that, and the year after that, however many years it takes.

That is how we do it in California. As long as there is life, that long do we keep fighting. We will keep going back to Sacramento until my son walks again— and when that happens, the research will have cleared the way for millions of others to stand up from their wheelchairs, and walk away from them forever.

To paraphrase another Governor of California, that great supporter of research Arnold Schwarzenegger, who said in the classic movie TERMINATOR:

“We’ll be back.”

IN ONE MAN’S HANDS: Governor Brown May Decide Paralysis Research

By Don C. Reed

On September 9th, the California state Senate voted a unanimous YES to restore one million dollars in funding to the Roman Reed Spinal Cord Injury Research Act.

The bill was AB 714 (Wieckowski, D-Fremont), and the Senate voted 39-0 in favour.

In the Assembly, the numbers were 68-3.

Talk about overwhelming support– in the entire state legislature, only three people voted against this bill.

Why did Assemblymembers Tim Donnelly, Brian Jones and Melissa Melendez vote against research intended to fight paralysis and get people out of wheelchairs? I don’t know.

If I lived in their district, I would ask them.

But now the decision is in the governor’s hands. On Jerry Brown’s desk is that bill: almost unanimously supported by the California legislature.

The highly successful program has brought in roughly five dollars for every one it funded. For a ten-year expenditure of $14 million, the Act attracted $84 million in add-on grants from the National Institutes of Health (NIH) and other sources.

Governor Brown’s thumbs-up or down may affect millions of paralyzed Americans, and their families.

Families like us.

On September 10th, 1994, nineteen years ago today, while my wife Gloria and I watched from the sidelines, our son Roman Reed was playing college football. At middle linebacker, he was playing his usual terrific game—nineteen solo tackles—the announcer called his name so many times he made a little joke out of it: “Yes, you guessed it, Roman Reed, a-gain!”

And then it happened. Roman dived in to make one more tackle. There was a hideous sound, like an axehandle breaking, audible even above the surf-roar of shoulder pads colliding– and our world was changed, perhaps forever.

The other athletes got up from the pile of bodies, and walked away. Our son did not. His neck was broken; he was paralyzed from the shoulders down.

But Roman had no interest in staying paralyzed. In the months that followed, he underwent gruelling rehabilitation exercises (which our family went deep in debt paying for) and used experimental medication, then undergoing human trials.

He recovered the partial use of his arms, learning to drive an adapted van.

But it was not enough. He wanted it all: cure.

In 1999, his struggle inspired the Roman Reed Spinal Cord Injury Research Act, authored by Assemblyman John Dutra of Fremont.

Hundreds of dedicated wheelchair warriors like Karen Miner, Fran Lopes and their families helped wrestle the bill up the many steps to become law.

From 2000 to 2009, California had a small but terrific paralysis research program. We did some pioneering stem cell research, with formerly paralyzed rats walking again, and the results covered on national TV. But mainly we worked on the “everything else” that must be done for cure to become real.

“Roman’s Law” was renewed twice, almost unanimously—one person voted no– but in 2010 the state was in a recession, and the program’s funding was removed.

Naturally, we fought back. Because there was no money in the general fund, we tried for alternative funding. In 2011, we asked for a $3 per traffic ticket add-on, money for research. That was shot down in the Assembly Appropriations committee. The next year we asked for just one dollar per ticket—which passed both the Assembly and the Senate—but Governor Jerry Brown vetoed it.

Why did the Governor deny our bill? His veto message made it clear he did not approve of fee-based government, which was understandable. The program should be paid for out of the general fund, he said. We agreed.

So, we altered the bill to address the Governor’s objections. We asked one million dollars from the General Fund: to keep the Roman Reed Spinal Cord Injury Research Act alive.

And now that bill is in his hands– as is the fate of every child or adult in a wheelchair, who dreams of cure.

Please contact Governor Jerry Brown today. The best way is a letter, or FAX—use the contact information below:

Governor Jerry Brown
c/o State Capitol, Suite 1173
Sacramento, CA 95814
Phone: (916) 445-2841
Fax: (916) 558-3160
Or, you can easily e-mail him, using the form at the following URL:

http://gov.ca.gov/m_contact.php

Just politely ask Governor Brown to sign AB 714 into law. If you want to say more, that is fine too—but that one sentence we really need.

For more background, here is the press release from Assemblymember Bob Wieckowski’s office:

Senate Approves Wieckowski Spinal Cord Injury Research Bill
AB 714 now heads to the Governor
Sacramento – The state Senate today unanimously approved a bill by Assemblymember Bob Wieckowski (D-Fremont) to fund the Roman Reed Spinal Cord Injury Research Program administered at the University of California, Irvine. The bill, AB 714, passed 39-0 and now goes to Governor Brown. The Governor has until Oct. 13 to take action on the bill.
“This bill has enjoyed strong bipartisan support in the Legislature because it promotes state of the art research into spinal cord injuries and helps leverage additional funding from the National Institutes of Health and foundations,” Wieckowski said.
AB 714 directs $1 million from the general fund to restore funding to the program, which was created by the state Legislature in 2000. Budget cuts eliminated state funding during the recession. Over the years, the program has attracted roughly $5 in federal funds for every $1 spent in state funds.
Researchers, primarily from public and private universities in California, apply for Roman Reed research grants. Discoveries through this research have resulted in new robotic devices to help patients recover movement, and advancement of new drugs to pre-clinical trials. The discoveries made through this research also inform our understanding and treatment of diseases like multiple sclerosis, spinal muscular atrophy, Parkinson’s disease, and many more.
The program is named after Fremont Planning Commissioner Roman Reed, who was paralyzed in a Chabot College football game. He is now a spinal cord research advocate who has helped increase research funding in states across the country.
In the past three years top researchers from the state’s universities, as well as biotech organizations such as BayBio and the California Healthcare Institute, have expressed their support for Wieckowski’s efforts to refund the Roman Reed Spinal Cord Injury Research Program.
Assemblymember Wieckowski’s district includes San Jose, Santa Clara, Milpitas, Fremont and Newark.
CONTACT: Jeff Barbosa, 916-319-2025
P.S. Folks, if you like my stuff, please click LIKE, write a comment, Tweet it, or otherwise share with friends. Thanks! –DCR

http://www.huffingtonpost.com/don-c-reed/which-country-will-be-fir_b_3824874.html

Please check out this article I wrote for Huffington Post….

great pic of Roman crossing new Bay Bridge, first in wheelchair– and tomorrow is key vote of Senate Approps committee!!!!!

 

Why Cure Research Must Be Supported: a Life or Death Matter

By Don C. Reed

Remember what Spartan mothers told their sons before they went off to war?

“Return with your shield, or on it.” 

To me, that advice fits the budget battles for medical research funding, whether local or national.

If people are dying of incurable disease, (which they are), and research is the only hope for cure (which it is), than the struggle can be summed up in three short words:

Win, or die.

Where this gets up close and personal for me is the battle against paralysis.

My paralyzed son inspired California’s Roman Reed Spinal Cord Injury Research Act (RR Act), which funded scientists from 2000-2010, $1.5 million  a year.

In 2010, state money was short, and the funding was removed. We have been trying ever since to put it back.

Assembly Bill 714 (Wieckowski, D-Fremont) asks that one million a year from the General Fund be dedicated to the RR Act.  AB 714 has gained strong bipartisan support, passing  the Assembly, 68-3, and the Senate Health committee, 9-0.

Now we must face the Senate Appropriations Committee (August 12th), followed by the full vote of the Senate, after which we hope the Governor will sign the bill.

Last Tuesday I had the privilege of meeting with Donna Campbell, Deputy Secretary of Health, in Sacramento.

For a solid hour I was allowed to make the case that California would benefit by investing one million dollars a year into paralysis cure research.

The problem is huge. Roughly five and a half million Americans are paralyzed today, roughly one in fifty citizens.

http://www.christopherreeve.org/site/c.ddJFKRNoFiG/b.5900347/k.3B2/PARALYSIS_SURVEY_ALMOST_6_Million_affected.htm

Financial ruin is an ever-present threat. Lifetime medical expenses for a paralytic can reach three to five million, forcing many onto government relief.

Some endure endless pain, like having one’s skin sandpapered off, and gasoline poured on. Many need assistance with the smallest acts of daily life; using the restroom may take two hours and require help.

On the positive side, paralysis research benefits many disorders: traumatic brain injury, stroke, Alzheimer’s, Lou Gehrig’s disease, Parkinson’s, multiple sclerosis, spina bifida, muscular dystrophy, Spinal Muscular Atrophy  (SMA), and more.

How does the program work? California scientists apply for small grants from the Roman Reed program. Succeeding with those makes obtaining larger grants much easier.   

Example: Dr. Ray de Leon received a Roman Reed grant of $74,000 to study robotics for paralysis rehabilitation. The National Institutes of Health gave him an add-on grant of $1.3 million…  (see appendix 6 in our 58-page document:  http://www.reeve.uci.edu/roman-reed-research-grants.html. )

For a ten-year expenditure of $15 million, the program attracted an additional $83.9 million from outside sources: new money and jobs for the state.    

The meeting seemed to go well.  Deputy Campbell was already fully informed about the program, and she asked in-depth perceptive questions; her secretary took careful notes.  And Deputy Campbell is the person who will be discussing AB 714 with Secretary of Health Diana Dooley, health advisor to Governor Brown.

After the meeting, I walked to the Capitol building, to visit the offices of the Senate Appropriations Committee members, seven Senators who hear the bill next.

But when I stepped out of the elevator on the fourth floor, something was different.

Usually the halls are jammed with humanity:  chattering civilians, schoolkids and lobbyists, everybody talking at once:  a cheerful chaos.

Today, it was silent. The hallway was empty. I could see buffer marks on the gleaming immaculate floor.  

Then I remembered.  This was the break between sessions, and the legislators were not there. Many have apartments in Sacramento, and only get to see their families on the weekends. Between sessions they rush home, and spend time with their children and grandchildren, and re-connect with constituents.

But behind the closed doors, democracy pulsed.  Legislative aides and staff were hard at work. These unsung heroes keep their leaders up to date on hundreds of complicated bills, as well as making phone calls, typing emails, filling out forms and setting up meetings—the chores that make government work.    

Though we are always glad to speak with a legislator, those meetings are few. It is to the aides we advocates turn.

 And it always begins with something like the following:

“Hi, I’m with AB 714, the Wieckowski bill?  It goes to Appropriations on the 12th; is there somebody  I could talk to?”

If the health-issues aide was available, we talked. If not, I left materials: our 58-page booklet, a 3-page overview letter, and of course a contact card.

Nowhere did I feel unwelcome. AB 714 seems to be a bill everybody can support:  Republicans and Democrats alike. Everyone has a family they love; we all face the fear of crippling disease or injury: cure research should be above politics.

Three hours later, I was on the freeway, heading home.

Next week Roman will make the same trip to the Capitol.   

Roman’s driving motivation is a little girl named Gwendolyn Strong, age four. She has a form of progressive paralysis called Spinal Muscular Atrophy (SMA); a terrible condition. Right now she can only move her eyes. Wherever Roman speaks, he always mentions Gwendolyn, and her parents Bill and Victoria, dedicated to defeating SMA.

Their latest effort is an astonishing fundraiser, an 11 mile surfboard paddling challenge done by children, to raise funds to fight the disease. http://thegsf.org/blog/detail/keiki_paddle_selects_thegsf/

My motivation is my son.  When he was first paralyzed, a doctor told me Roman would never walk again, never close his fingers, and that I would most likely outlive him. The stress of paralysis is too much for the body, and it often wears out prematurely.

If the program dies, it also kills my best hope of seeing Roman walk again. That is why I understand what the Spartan mothers said: and why we must keep trying.

So long as breath prevails, that long the fight goes on.

If you want to help, send an email today to: Darrell.Steinberg@SEN.CA.GOV. This is the President Pro Tem of the Senate, as well as Chair of Appropriations. His recommendation carries enormous weight. 

Just one short sentence is all I ask: tell him you support Assembly Bill 714 (Wieckowski, D-Fremont) to dedicate one million dollars a year to the Roman Reed Spinal Cord Injury Research Act.

Help us defeat paralysis in our lifetime.

INDEPENDENCE DAY—from Paralysis?

By Don C. Reed

Imagine if the freedom to move your body was taken away, and you were imprisoned by the invisible chains of paralysis.

http://www.christopherreeve.org/site/c.ddJFKRNoFiG/b.5900347/k.3B2/PARALYSIS_SURVEY_ALMOST_6_Million_affected.htm

Whether caused by stroke, spinal cord injury, multiple sclerosis, muscular dystrophy, Parkinson’s, Alzheimer’s, Lou Gehrig’s disease (ALS), Spinal Muscular Atrophy or other condition, paralysis is far more common than generally realized. Endured by five and a half million Americans—nearly two per cent of the population– paralysis is a drain on the family and the economy, as well as the individual.

On July 3rd, the day before Independence Day, the California Senate Health Committee will hear a bill which fights for freedom from paralysis.

AB 714 (Wieckowski, D-Fremont) would provide one million dollars annually for the Roman Reed Spinal Cord Injury Research Act of 1999, partially restoring its original funds.

For ten years, “Roman’s Law” (named after my paralyzed son), has been hugely successful. In financial terms, it “turned a profit”, bringing in more than five times its cost: leveraging $15.1 million to an additional $84 million—attracting federal dollars in add-on grants– new money for the state.

More important was the progress toward our long-term goal of getting people out of wheelchairs.

Small but effective, the RR Act funded research leading to the world’s first attempt to heal damaged spinal cords with embryonic stem cells. But while spectacularly effective, the new stem cells were only a small portion (4 of 129 projects) of the effort. The RR Act focused primarily on the “everything else” that must be done:  struggling with problems like potentially fatal blood pressure irregularities, bowel and bladder problems, cheaper ways to perform vital rehabilitation and much more.

The program produced 175 peer reviewed scientific papers, a small library, seeking to share knowledge of what works and what doesn’t, so scientists who follow will build on their accomplishments, and avoid their mistakes.

Three hundred scientists (many quite young) benefited from our system of small grants.  It is extremely hard for new scientists to obtain funding. In 1980, the average age of a scientist getting his/her first grant was 36; today, 44.  But with success on a small Roman Reed grant, including that all important “initial data” validating their approach, the chances for larger grants greatly improve.

With support from both sides of the aisle, the program was unanimously renewed in 2005 and again in 2010—but the second time the economy was in a rough patch, and our funding was removed.

So we came back the next year and tried again. With the leadership of Assemblyman Bob Wieckowski, the backing of patient advocate groups like Unite2FightParalysis, friends in the biomed community like the California Health Institute, stalwart friends like Karen Miner, Fran Lopes and Susan Rotchy, not to mention the indefatigable energy of Roman, who refuses to be limited by paralysis, we developed an alternative method of funding.

In 2011, we offered a bill to fund the RR Act with a traffic ticket add-on of $3. Since car crash is a major cause of paralysis, it made sense bad drivers should help pay the cost of cure research. However, though we passed two committees, the third (Appropriations) shot us down, denying the bill. 

In 2012, a similar but smaller bill, ($1 per ticket) made it through both houses of the legislature, Assembly and Senate. Unfortunately, Governor Jerry Brown disapproved of the traffic ticket increase, saying the program should be paid for from the general fund.

In 2013, we are back once more. This time, the mood in the Capitol is different, more hopeful, and there is a little money in the till.

To hopefully meet the Governor’s concerns, we made it a straight funding bill, two million a year from the General Fund. The Assembly Appropriations committee okay’ed us for half—one million dollars a year.

The entire Assembly voted on our bill, and approved it, 64-0.

Now we must make our way through the Senate. If we meet with positive results, the bill will be brought before the Governor once more.

Want to help? It is not difficult. Fifteen minutes would make a real difference.

We need the advocate’s tool: the one-sentence power letter.

You’re free of course to make your FAX or e-mail as long as you want.  But all the letter really needs is:

Contact information at the top of the page, including your phone number. They will almost certainly not call you, being invariably hard-pressed for time, but the number lets them know you are a real human being, and not some computer program.

Below that is your greeting, subject heading and a key sentence or two. Something like this:

RE: Support for Assembly Bill 714 (Wieckowski) to be heard on Senate Health Committee, July 3

Please vote YES on AB 714, to fund the Roman Reed Spinal Cord Injury Research Act.          

Name at the bottom, cut and paste the message, and FAX (best) or e-mail it to the nine Senators below. If time is too short, just reach out to the Chair and Vice Chair.

SENATE HEALTH COMMITTEE

Chair: Ed Hernandez, ROOM 2080,

Ph. 916-651-4024, FAX 916-445-0485, Senator.Hernandez@senate.ca.gov

Vice Chair: Joel Anderson,  ROOM 5052,

Ph. 916-651-4036, FAX 916-447-9008, Senator.Anderson@senate.ca.gov

Jim Beall—ROOM 2068,

Ph. 916-651-4036, FAX 916-323-4529, Senator.Beall@senate.ca.gov

 Kevin DeLeon—ROOM 5108,

Ph. 916-651-4022, FAX 916-327-8817, Senator.DeLeon@senate.ca.gov

Mark DeSaulnier—ROOM 5035

Ph. 916-651-4007, FAX 916-445-2527 Senator.DeSaulnier@senate.ca.gov

Bill Monning—ROOM 4066

Ph. 916-651-4017, FAX 916-445-8081 Senator.Monning@senate.ca.gov

Jim Nielsen ® ROOM 4062,

Ph. 916-651-4004, FAX 916-445-7750   Senator.Nielsen@senate.ca.gov

Fran Pavley, ROOM 4035

Ph. 916-651-4027, FAX 818-876-0802   Senator.Pavley@senate.ca.gov

Lois Wolk—ROOM 5114

Ph. 916-651-4003, FAX 916-323-2304   Senator.Wolk@senate.ca.gov

Help us cure paralysis in our lifetime—for an Independence Day the world will celebrate.

 

 

 TWENTY WORDS TO DEFEAT PARALYSIS?

 

By Don C. Reed

 

If a 20-word letter might rescue five million people from paralysis— would you write it?

 

If your answer was yes, then help me now.

 

First, America has more than five and half million children and adults suffering from paralysis.  To verify this, cut and paste the following into your browser bar:

 

http://www.christopherreeve.org/site/c.ddJFKRNoFiG/b.5900347/k.3B2/PARALYSIS_SURVEY_ALMOST_6_Million_affected.htm

How do we fight that?

Pass California’s Assembly Bill 714 (Wieckowski, D-Fremont) and get that research moving again.

AB 714 would restore $2 million a year into paralysis cure research, a California program called the Roman Reed Spinal Cord Injury Research Act of 1999, named after my paralyzed son. “Roman’s law” did a great job for ten years, unanimously approved by the Assembly, Senate, and Governors Gray Davis and Arnold Schwarzenegger– and then, in 2010, its funding was removed.   http://www.stemcellbattles.com/

Assembly Bill 714 would put that money back. (for non-partisan analysis, see: http://www.leginfo.ca.gov/pub/13-14/bill/asm/ab_0701-0750/ab_714_cfa_20130412_170728_asm_comm.html)

No matter where you live, if you want to see paralysis cured in our lifetime, here is something small but powerful you can do to help.

Write a one-sentence action letter. You can write more if you want, of course, but all we really need is a short note, ideally a FAX to: (916) 319-2143. 

Here is the letter.

“Dear Chairman Gatto: please support Assembly Bill 714 (Wieckowski, D-Fremont), restoring funding to the Roman Reed Spinal Cord Injury Research Act.”

Signed,

Your Name

Or, send the same message by email to: Assemblymember.Gatto@assembly.ca.gov 

The California Assembly Appropriations Committee will decide if AB 714 goes forward or dies. Chairman Mike Gatto will dominate the decision.  

Would you like him to say yes to paralysis cure?  Send him a FAX or e-mail.

But you are too busy?  Of course you are: we all have more chores to do than we can get done.

But here are 90 of the world’s busiest people. They squeezed in the time somehow; maybe you can do the  same.

Most supported us with an endorsement letter: like Bill “Superfoot” Wallace, five-time world champion in full contact karate. You might have seen him in movies (usually as the villain) fighting Chuck Norris and Jackie Chan—Bill Wallace wrote one of our very first letters of support, back when “Roman’s Law” was just beginning.

Others helped in different ways. U.S. Representative Nancy Pelosi, clearly one of the busiest women on the planet, gave several hours of her life to attend the American Paralysis Association dinner, when Roman and I received the Willie Shoemaker award for advancing awareness of paralysis. Ms. Pelosi sat beside my wife Gloria and our son, and maybe her phone was ringing all night, but Leader Pelosi was there.  

Sadly, some are gone from us, like Christopher “Superman” Reeve, and General “Stormin’ Norman” Schwarzkopf—but their shining example still lights our way.

I wish we could use the same letters over and over again, but we cannot.  Every new bill requires a new letter. So every campaign I must reach out, and ask for help again…

Here are some of the world’s busiest people, who stood up for paralysis cure.   

Paul Berg (Nobel Prize winner), Stanford University School of Medicine;

Jeffrey A. Bluestone, Executive Vice Chancellor and Provost, University of California, San Francisco;

Rayilyn Brown, Arizona Chapter National Parkinson Foundation;

Nancy Brackett, University of Miami School of Medicine;

Dr. Jacqueline Bresnahan (UCSF), Dr. Mike Beattie (UCSF), co-inventors of Beattie-Bresnahan Scale;

Nina Brown, Founding Board member, Lorraine Chammah, President,
Texans for Advancement of Medical Research;

California Institute for Regenerative Medicine’s Chair Jonathan Thomas;

Susan Chandler, Treasurer, California Disability Rights Organization;

Dr. Jose Cibelli, Champion Michigan research leader;

Ellen Corbett, California Senate Leader;

Stemcyte, President Calvin Cole;

California Chiropractic Association, Kassie   Donoghue, DC, Government Affairs Chair;

Dr. Graham Creasey (Palo Alto VA & Stanford);

W. Dalton Dietrich, Ph.D., Miami Project to Cure Paralysis;

John Dutra, (D-Fremont, retired) original author of the Roman Reed Spinal Cord Injury Research Act of 1999;

V. Reggie Edgerton, UCLA Professor, Brain Research Institute;

Brooke Ellison,(Christopher Reeve’s last project was directing a movie about paralyzed Brooke);

Dr. Michael Fehlings (University of Toronto);

Lucy Fisher and Doug Wick, executives at Sony Pictures;

Jeannie Fontana, CEO SALSA, Inc. Solutions for ALS;

Eric Fingerhut, Chancellor, University System of Ohio;

University of California, Karen French, Associate Director, Legislative Affairs;

John Garamendi, U.S. House of Representatives;

Leeza Gibbons, former Host of Entertainment Tonight, founder of Leeza’s Place;

Lawrence Goldstein, Director, UCSD Stem Cell Program;

Stu Gordon, Gordon and Rees, LLP;

Molly Ingraham, of the California Healthcare Institute (CHI, representing more than 100 biomedical companies);

Hans Keirstead, UC-Irvine Professor, Chair, Scientific Advisory Board, California Stem Cell, Inc.;

Marc Keahey, Alabama Senate Minority Leader;

Stephanie A. Kolakowsky-Hayner, Director of Rehab Research, Santa Clara Valley Medical Center;

Suzy Kim, Medical Director, SCI Acute Care, UCI Medical Center;

Bob Klein, Founder, Proposition 71, the Californians for Stem Cell Research and Cures Initiative, Chairman Emeritus of the Independent Citizens Oversight Committee;

Dr. Paul Knoepfler (UC Davis), world’s only blogging stem cell scientist;

Dena Ladd, Executive Director, Missouri Coalition for Lifesaving Cures;

Sherry Lansing, Chair, Sherry Lansing Foundation, Winner Jean Hersholt Humanitarian Award;

Dr. Jane Lebkowski (Neuralstem Cell Inc);

Stem Cells Inc., Martin McGlynn, President & CEO;

Dr. Stephen McKenna (Santa Clara Valley Medical Hospital);

Karen Miner, Chair, Research for Cure;

Ed Monuki, Associate Professor, UC Irvine;

Chris Murphy, United States Senator, Connecticut;

Rania Nasis, General Manager, CA Stem Cell, Inc.;

Gavin Newsom, Lt.Governor, California;

Dr. Jan Nolta (UC Davis);

Richard Patterson, M.D., Santa ClaraValleyMedicalCenter;

Nancy Pelosi, Minority Leader, House of Representatives;

Renee A Reijo Pera, Director of Reproductive and Stem Cell Biology Division, StanfordUniversity;

John Perez, CA Assembly Speaker; 

Dan Perry, President, CEO, Alliance for Aging Research, Washington, DC;

Claire Pomeroy, Chief Executive Officer, UC Davis Health Department;

The late Christopher Reeve, “Superman” in movies, champion of advocates;

Brock Reeve, Executive Director, Harvard Stem Cell Institute, (and Christopher Reeve’s brother);

Bill Remak, Chairman, California Hepatitis Task Force;

Duane Roth, CEO, CONNECT, entrepreneurial group;

Rose Marie Salerno, VA Palo Alto Health Care System;

Lori Sames, Executive Director, Hannah’s Hope Fund;

The late General Norman “Stormin’ Norman” Schwartzkopf, retired;

Bernie Siegel, founder and chair, Stem Cell Action Coalition (70 groups), and Genetics Policy Institute, founder World Stem Cell Summit;

Dr. Jerry Silver (Case Western);

Marilyn Smith, Executive Director, Unite 2 Fight Paralysis;

Michael Sofroniew, M.D., Professor, UCLA; 

US Representative Eric Swallwell;

Texans for Stem Cell Research, David L. Bales, Chairman;

Dr. Ann Tsukamoto (Stem Cells Inc);

Dr. Marc Tuczynski (UCSD);

Jim Bennett, Spinal Cord Injury Research Foundation, Rutgers University, New Jersey;

Bill “Superfoot” Wallace, undefeated 5-time full-contact World Karate Champion;

Christopher & Dana Reeve Foundation, Peter T. Wilderotter, President & CEO;

Dr. Irv Weissman, Stem Cell Inc.;

Steve Westly, Former CA Comptroller;

Christi Yamaguchi, Olympic Gold Medalist, figure skating;

Shinya Yamanaka, Ph.D  (inventor of induced Pluripotent Stem cells), Director, Center for iPS Cell Research and Applications, Kyoto University, Japan;

Wise Young, RutgersUniversity, pioneer of spinal cord injury research for cure, co-inventor of methylprednisolone, and 4-AP, currently developing clinical trials for cordblood and lithium in China;

Mark Yudof, former President of the University of California;

Fanyi Zheng, Professor and Associate Director, Shanghai Stem Cell Institute, Jiao Tong University School of Medicine, China;

Jerry Zucker (movie director, Ghost, Airplane, Naked Gun), Founding board member, CURESNOW;

Still others who helped the cause of spinal cord injury research for cure: Dr. Leif Havton (UCI), Dr. Deepak Srivistava (Gladstone Institute), Dr. Evan Snyder (Sanford Burnham), Dr. Tim Wick (UAB),  Dr. Gary Steinberg (Stanford),  professional athletes Brent Jones and Jim Harbaugh of the San Francisco 49’ers, television personality Gary Stevens, TJ Atchison (first paralyzed person in the world to receive embryonic stem cells in his spine), Tory Minus, vice president Alabama Institute of Medicine,  three great fire-fighters–Hayward Fire Chief Garrett Contreras, Fremont Fire Chief Dan Lydon (Ret.), Firefighter of the Year Jeff Leonard– folks at EKSO Bionics and  Bay BIO, and thousands more, wheelchair warriors Fran Lopes, Karen Miner and Susan Rotchy of Research for Cure, and thousands more friends and family

–and, hopefully—you!

 

IF YOU WERE PARALYZED…Two  Champion Researchers Fighting on Your Side

 By Don C. Reed

 Imagine being paralyzed: whatever position you are in right now, you must stay there– until someone comes to move you.

As an American, the chances of you becoming paralyzed are roughly one in fifty.

http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.5184189/k.5587/Paralysis_Facts__Figures.htm

With a U.S. population of 315 million, an estimated 5.6 million children and adults suffer paralysis. That’s 1.7% of America’s population, members of your family and mine.

One is my friend who recently incurred a nerve condition called Guillain-Barre’ (gee-on burray, GB) syndrome. He was paralyzed in hands and legs, but fortunately had the good sense to get to a physician immediately. GB can be fatal, if the chest cannot rise so the lungs inhale; the paralysis it brings can also be permanent, but generally it is not. GB affects the outer nervous system (peripheral) not the brain and spine. If all goes well, he should recover fully in one to six months.

My son Roman Reed became paralyzed with a spinal cord injury during a 1994 college football accident. His condition is considered permanent—but not by everyone.

Roman is not waiting around. He may require assistance to get out of bed in the morning, but once he is up, he is moving, fighting, working to develop a cure for paralysis.

Right now, a California bill called AB 714 is being proposed by Assemblyman Bob Wieckowski (D-Fremont)—to raise $2 million a year for paralysis cure research—restoring funding to the Roman Reed Spinal Cord Injury Research program. The first hearing was held on April 16th, in the Health Committee at the State Capitol, Sacramento, and it passed 16-2.

The next hearing will be at May 1st ., 9:00 AM in the Appropriations Committee, and that will be much tougher. We may win or lose by a single vote.

 Want to help? Send a FAX message (or e-mail, but FAX is better) to the chair of the committee, tell him you strongly support AB 714.

 Chair: Mike Gatto—fax (916) 319-2043;  email: Assemblymember.Gatto@asm.ca.gov

 What kind of scientists will receive grants, if AB 714 becomes law?

 Hans Keirstead and Mark Tuszynski are world leaders in paralysis cure research. Both have received grants from the Roman Reed program in the past, small grants which led to larger ones from institutions like the National Institutes for Health (NIH), the Christopher and Dana Reeve Foundation, and the magnificent California stem cell program.

 The two men are very different. Tuszynski is quieter, preferring to focus on the science.

 Dr. T. admits he was a skeptic about using stem cells to replace nerves lost after spinal cord injury.

 “I did not think it would have much of an impact,” he said, “because of the difficulty in growing axons through the injured spinal cord, and the complexity of neural brain circuits. How would stem cells navigate through the maze of the spinal cord?”

 Tuszynski’s opinion changed after his group started working on neural (nerve) stem cells, at the urging of a paraplegic scientist, Paul Lu, in his center for neural repair at UCSD.

 “We tagged the nervous system-derived stem cells with a green fluorescent marker, which allowed us to track the cells after putting them into the spine,” he said.

 “To keep the cells from washing out of the spinal cord, we embedded them in a gel. Finally, we added proteins, to stimulate the cells’ survival.

 “To our astonishment, the grafted nerve cells extended new connections (axons) over long distances, some nearly the entire length of the spinal cord.”

 It is amazing to see. Usually, when a non-scientist like myself looks at a photograph of a damaged spine, it is hard to tell what is going on. A v-shaped gap in the spinal column, a little tentative fuzz which might or might not be new growth—hard to get excited.

 This was different. At a recent meeting of the California stem cell program, the audiencegasped at the micro-photograph of green-marked nerves leaping across the gap in the injured spinal cord, reconnecting on the other side. The new nerve cells were marked with green, so you could follow the growth—it was like the whole spine was slathered with lime green paint.

 And what did it mean, in practical terms, was there any recovered motion?

 “Injured rats with completely severed spinal cords recovered significant motion, including the ability to move every joint of their limbs…” said Dr. Tuszynski, “But they still could not support their weight on their legs. So there is still room for improvement.”

 But Tuszynski and his colleagues are moving forward to test the procedure on non-human primates at UC Davis. Success or failure there will determine if the approach is brought to human trials…

 And after that?

 “Chronic”, he said. That is a huge word to a paralyzed person. It means permanent, i.e. anyone who has been paralyzed more than a couple of weeks, and is likely to remain so. Most experiments are done with new injuries, called acute.  These may recover to an extent on their own, so it is hard to tell if a treatment worked or not. But if improvement is gained for a chronic patient, who has been paralyzed over time, that is success.

 And the second scientist?  Dr. Hans Keirstead is an outgoing individual who loves to fly his own helicopter—and is a master of the world of business.  

 Professor of Anatomy and Neurobiology at UC Irvine, Hans founded the Sue and Bill Gross Stem Cell Research Center, and holds a leadership position at California Stem Cell, Inc.

 Famous for his use of stem cells to re-insulate damaged spinal nerves, an approach which Geron Inc. took all the way to human trials, (canceled for financial reasons, the tests were successful in their purpose, to test for safety),  Keirstead also did pioneering work with an injectable protein called IP-10.  He states that “The treatment showed strong efficacy in Phase 2 clinical testing in humans with ulcerative colitis and rheumatoid arthritis. It is anticipated that the treatment will be used ‘off label’ for Spinal Cord Injury and other diseases and injuries of the nervous system”.

 Working with his father, Hans built hospitals in Africa, distributing 600 wheelchairs and several tons of multi-vitamins.

His stem cell expertise involves him in many endeavors, including human trials of a way to fight cancer. (“Not my invention,” he hastens to add, ‘The approach was invented by Dr. Robert Dillman of HoagHospital. I led the scale-up of the manufacturing, and the commercialization of the program.”)

Presently he is attacking the problem of the spinal cord scar, which develops at the injury, and blocks the messages between brain and body.

 Why did spinal cord injury call to him?

“The spinal cord is anatomically simpler than the brain, and controls functions that are easier to measure than the brain,” he responds.

Treatments which help spinal cord injury may also help traumatic brain injury, ALS (amyolateral sclerosis, Lou Gehrig’s disease), stroke, cerebral palsy, spina bifida, Parkinson’s, muscular dystrophy, multiple sclerosis, Spinal Muscular Atrophy (SMA, a cruel condition which paralyzes and kills children, often before the age of two) and more.

 Keirstead is attacking paralysis from four directions: to reduce the damage from the body’s reaction to new injuries; attempting to eliminate the spinal cord scar to allow nerve communication between brain and body; reinsulating of damaged nerves in the spinal cord; and the development of the motor neurons, great long nerves which stretch from spinal cord to muscle.

 These are scientists the Roman Reed Spinal Cord Injury Research Act has funded in the past, and may again if AB 714 (Wieckowski, D-Fremont) becomes law.

 And if their research is not funded, so that paralysis continues, uncured?

 A paralyzed person faces lifetime medical costs of one to five million dollars.

 A single individual’s medical care could cost more than the entire annual funding of the program to end paralysis.

 Cure—or the unending expense of lifetime care—that is our decision.

 

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