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Archive for August, 2012

WRITE JERRY BROWN A LETTER—and Ask Five Friends to do the Same

You may contact Governor Jerry Brown by mail at:

Governor Jerry Brown, c/o State Capitol, Suite 1173, Sacramento, CA 95814

Phone: (916) 445-2841      Fax: (916) 558-3160

Dear Friend of Research for Cure:

My son Roman Reed broke his neck in a college football game, September 10th, 1994, and became paralyzed from the shoulders down. Ever since, we have been fighting for a cure.

In 1999, a California law, the Roman Reed Spinal Cord Injury Research Act began quietly working toward a cure for paralysis. State-funded, it raised about $1.5 million a year, giving small grants to scientists up and down the state, from Humboldt to the North to San Diego.

It was a great program (more on that in a minute) twice-renewed by near-unanimous votes of  the state legislature. Unfortunately, two years ago, the money was removed, gutting the program.

We fought to restore funding in a non-tax way, asking that every traffic ticket add an additional $3, the money to go to the state paralysis program. Since car crash is a major cause of paralysis, other states have similar programs. But we were turned down.

This year we tried again, asking for just $1 a ticket– and we passed committee after committee, approved all the way through the California Assembly and the Senate. It was a fight every step, but people on both sides of the aisle stuck up for us.

Folks, I have held in my hands a laboratory rat which had been paralyzed, but which now walked again, thanks to research sponsored by this very program.

Should we not fight to keep this program alive?

By the time you read this, AB 1657 will be in the hands of Governor Jerry Brown. He can either sign the bill, allowing the research to go forward, or veto it—and let the program die.

If you want him to sign that bill, AB 1657, a $1 traffic ticket add-on to fight for cure for America’s 5.6 million paralyzed citizens, I ask you to contact him today:

WRITE, FAX, or PHONE Governor Jerry Brown—and ask five friends to do the same.

Here’s why: (feel free to use this as background, but it is more effective if you do not copy it.)

Small but mighty, the Roman Reed Spinal Cord Injury Research Act has accomplished much:

 

  • Funded pioneering stem cell research leading to the world’s first clinical trials for a human embryonic stem cell derived therapy;
  • Developed robotic equipment to systematize vital rehabilitation for paralytics;
  • Leveraged $15 million California into $100 million by attracting out-of-state funds;
  • Published 175 scientific papers, a small library of spinal cord injury research;
  • Invented a new Petri dish, (patent pending) to replace an expensive machine;
  • Adapted a brain/computer interface, allowing paralytics to work a key board by thought;
  • Led major innovations in rehabilitation and therapy advances to address debilitating complications.

The costs of paralysis are staggering. Depending on the injury, initial expenses for a newly paralyzed individual may run as high as $785,000 for the first year alone, with lifetime costs of $4,373,912—or, in a “best case scenario”, as “low” as only $321,720 for the first year and $1,031,394 lifetime expenses. Few families can afford such bills.

5.6 million Americans with Paralysis—11% in California

Recent estimates put patient population of spinal cord injured at 1.276 million, and all forms of paralysis at 5.6 million, roughly one in fifty Americans being paralyzed. California shares approximately 11% of this incredible financial and physical burden.

We do not need complete cure  Any improvement is hugely beneficial– in dollars as well as reduced suffering.  When my son Roman regained the use of the triceps muscles on his arms, that allowed him to drive an adapted van, instead of having to pay an attendant.

Now,  imagine a person suddenly able to breathe on their own—leaving the ventilator machine.

“Even small gains in connectivity can yield large gains in function”, says Aileen Anderson, ph.D., Director, Christopher & Dana Reeve Foundation, Associate Professor, UC Irvine. “..a treatment that restored as little as 1-2 levels of ability could save $1.4 million over the life of the patient. Extrapolating these savings to just the estimated 77,000 cervical (high neck break) patients in California results in an estimated $86 billion dollars in reduced health care costs…”  

The program does not focus on stem cells, although it would certainly cooperate with the California stem cell program on specific projects, if the need arose. But mainly the program is for everything else, the very specific needs of spinal cord injury, far beyond regenerative medicine. Of the 129 projects completed in the program’s history, only 9 involved stem cells. 

Areas of concern include: pressure sores which rot to the bone; blood pressure irregularities which can kill; temperature control problems so a person can be trembling with cold in blasting heat; bowel, bladder, and sexual dysfunction;  severe chronic pain, and more.

Grants Available to All California Scientists:

Operated by the University of California system, with headquarters at UC Irvine, the Roman Reed Act provides seed money in a competitive basis up and down the state, from San Diego to Humboldt.  Scientists from both public and private institutions may apply.

Financial Leverage

AB 1657 is revenue-positive. The state has already received better than a 4 to 1 return on its ten-year “investment” in the Roman Reed Act. Approximately $15 million California dollars attracted an additional $85 million in add-on funds from out of state resources like the National Institutes of Health—new money for the state.

Connection between penalty and program: the funding source is directly related to the injury: car crash is a major cause of spinal cord injury. Strong precedent exists. Eight U.S. states–Florida, Illinois, Kentucky, Missouri, New Jersey, New York, South Carolina and Alabama– operate similarly funded programs.

Christopher Reeve, who supported the program, said: “One day, Roman and I will stand up from our chairs and walk away from them forever.”

Cure did not come in time for the paralyzed Superman, but I believe we will see his great dream come true and defeat paralysis in our lifetime.

The flame of his faith still lights our way. Help California take up the torch again.

Write Jerry Brown today. Don’t put it off. Do it right now.

Thank you.

Don C. Reed

Citizen-sponsor, the Roman Reed Spinal Cord Injury Research Act

 

 

 

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YOUR LETTER TO JERRY BROWN MIGHT HELP CURE PARALYSIS

By Don C. Reed

Numb with shock, disappointment and rage, I hurled myself out of the Senate gallery, sat down on the cold marble floor, got out my phone book and cellphone.

We were one vote short…

It was Wednesday, August 22. For two days I had been sitting in that chamber, waiting for AB 1657 (Wieckowski, D-Fremont) to be decided: the bill that would allocate funds (or not) to the Roman Reed Spinal Cord Injury Research Act, named after my paralyzed son.

Yesterday I had gotten the word the bill might come up. It was nine-thirty in the morning when I heard, and I did not even take time to put my good suit on, just came as I was— got involved in a massive traffic jam on the way, three and a half hours for a two hour drive.

When I got to the Capitol, five Senators were still undecided: should they add a dollar to traffic tickets, to fund medical research toward a cure for paralysis? I visited their offices, spoke to the relevant aide.

“It’s a terrific bill, we brought in approximately $85 million dollars for the state in new money, matching grants and add-ons from outside sources– for a ten year investment of $15 million– better than a four to one return—what do you think? Would your Senator support?”

Four out of five I was able to reach, and they all seemed reasonable.

Then the voting began. I went upstairs in the beautiful Capitol building, to the spectators gallery…

In a wheelchair sat a broad-shouldered man with long golden hair and a beard like Buffalo Bill…. Roman smiled, and we waited…and waited.

We waited all day, till they ran out of time.

Then we went home.

In the morning it began again.

More sitting, plenty of time for hints of Senatorial personality.

One liked to shout his votes, usually “NOOOOO!!!”

Another said “aye” in a comical way, like falling off a cartoon cliff– “AIEEEE!”– it brought smiles in a tense situation.

If our bill passed, it would next go to “concurrence”, meaning the Assembly voted to approve or deny any changes made since they voted on it first.

And then…Governor Jerry Brown would see the bill. And decide.

His vote would be the most difficult of all.

Jerry Brown is from a famous California political family. All his life he has lived in a world of votes and arguments and various attempts at persuasion. He could evaluate arguments like a surgeon dissects muscle.

The only thing I could do was try to organize some letters: the old-fashioned kind, stamps and envelopes. It did not matter if a person had written in support before, or if he or she was out of state; we would need every conceivable letter to be sent to the Governor of California.

If curing paralysis in our lifetime sounded good, I hoped people would write polite letters to:

Governor Jerry Brown, c/o State Capitol, Suite 1173, Sacramento, CA 95814

The Governor must know how many folks support AB 1657, the $1 add-on to traffic tickets, money to go to the Roman Reed Spinal Cord Injury Research Act.

I am told he sometimes calls constituents for their opinion. So everyone should include their phone number, just in case!

“Sir?” It was the nice security officer.

Had I fallen asleep again? Was I snoring?

“Your bill is up next…Thought you might like to know.” She smiled. An act of kindness.

I turned my gaze back to the Senate floor, twenty feet below. All those desks, each with a button to push: for yes, or for no.

The black rectangle behind the President’s podium…red letters and numbers leaped into existence, and as quickly vanished.

AB 1657.

Then began a war of words.

For two days, bill after bill had passed or failed, most all without argument.

But our bill faced a fight.

Senator X. opposed our bill—twice, at length, passionately–because there were so many other unmet needs.

Senator Y. said traffic tickets cost too much. There was a rumor (unsubstantiated) that one of her family members had just gotten a traffic ticket and she was furious about that.

Senator Z. expressed concerns about stem cells, of which he did not approve.

I wished I could leap to the microphone to answer every word the objectors spoke: that our bill took nothing away from other program; that if traffic tickets were reduced proportionately, that would be fine; that we respected stem cell research but there was no need for us to compete with the California stem cell program– but this hour was for Senators alone.

Senator Wyland, a Republican, spoke up– on our behalf—twice!

Senator Correa asked an intelligent question, the answer to which deflated some objections.

Senator Corbett’s gentle eloquence reminded us what we were fighting for.

But it was Senator Kehoe, dressed all in white, who brought it all together: “As chair of the Appropriations Committee, I shared many of the objections raised today against AB 1657. But the purpose of this bill is so important, and its application to bad driving so appropriate, that I came to support it. I ask—I urge—your Aye vote.”

The vote was called: one by one the lights were lit—and when they were all counted, several times—we were one vote short. We needed 21. We had 20.

“On call,” said Senator Simitian, President Pro Tem of the Senate.

So close—to be stopped now? There were five Senators not in the room. Two Senators– Steinberg and Yee—were steadfast friends of research for cure. But could they be found in time?

Sitting on the floor because there were no chairs, I frantically began making calls. Who was in each Senator’s district, who might make a call on our behalf?

Chill marble seeped cold through my trousers.

Suddenly a hand clasped my shoulder.

I looked up, expecting to be told to move along.

But it was Jeff Barbosa, legislative aide for Bob Wieckowski, author of the bill.

Smiling.

“We got it,” he said, “Steinberg and Yee. Both of them.”

The Assembly and the Senate of California had taken our side.

Now, we only needed one more vote.

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SACRAMENTO MONDAY: THAT ALL MAY WALK

By Don C. Reed

Monday, August 6th. Wheelchair warriors will gather in Room 317 of the Sacramento Capitol Building. There will some brief speechifying, maybe a spectacular example of an exo-skeleton which allows paralyzed people to “walk”, and then—inside to a committee hearing.

Senate Appropriations will hear and decide on AB 1657 (Wieckowski, D-Fremont), a bill to tack on an extra dollar to traffic ticket fines, that money to be used for paralysis cure research. If it passes, it would mean about $3.5 million a year for research to get people out of wheelchairs.

My son Roman Reed has not walked for 17 years: not since that terrible day he broke his neck playing college football, September 10th, 1994.  For 17 years he has lived in a chair. 

I dream about him walking, sometimes. In the dream it is always sunrise, and I enter his room to help him get up.  But he is not in the bed!  I get frightened at first, where is he? But then I feel a tap on my shoulder. I turn around and there he is, towering over me at his full six feet four inches in height, and he has his best suit on, the brown one, and his beard and hair are the color of a golden lion. He smiles and gives me a hug. And then he walks out of the building.   

At this point the dream fades, and I wake to the greyer colors of reality.   

Monday…We are so close to success. The scientists can do it, but they must have the funding.

 If we can pass this committee, we only have the full Senate to convince, and a quick trip to Assembly for concurrence on details– and then we place AB 1657, the hard work of the scientists and the hopes and dreams of  all our families, before the Governor.

Monday….

FLASH! California paralysis cure research program brings in five times its investment!*

*Since the year 2000, the Roman Reed Spinal Cord Injury program has spent $17 million California dollars—and attracted $89 million dollars in add-on grants from the National Institutes of Health (NIH) in Washington, and other sources. California’s $17 million was leveraged into $106 million!  How many programs bring in more than five times their investment?

Assembly Bill 1657 asks for a $1 traffic ticket add-on.  This small penalty is reasonable because car crash is a major cause of spinal cord injury. It makes sense that the money be dedicated for  California’s paralysis cure research program.

A dollar a ticket would add up to about three and a half million dollars a year, to fight paralysis.

Help us with an e-mail of support? It could be just a single sentence—“I support AB 1657 to use a $1 traffic ticket increase to help cure paralysis”— and send that email to the addresses below.

SENATE APPROPRIATIONS COMMITTEE  

Cc: jeff.barbosa@asm.ca.gov.  (sponsor Bob Wieckowski’s legislative aide)

Senate Appropriations Members:

Senator Christine Kehoe (Chair) Room 5050, 916-651-4039

TED.MUHLHAUSER@SEN.CA.GOV   

Senator Mimi Walters (Vice Chair) Room 3082, 916-651-4033

senator.walters@sen.ca.gov

Senator Elaine Alquist Room 5080, 916-651-4013

sailaja.rajappan@sen.ca.gov 

Senator Bob Dutton Room 305, 916-651-4031

AMANDA.PLANT@SEN.CA.GOV

Senator Ted W. Lieu Room 4090, 916-651-4028

THEODATE.CLINE@SEN.CA.GOV

Senator Curren Price Room 2057, 916-651-4026

CURTIS.EARNEST@SEN.CA.GOV

Senator Darrell Steinberg Room 205, 916-651-4006 

DIANE.VANMAREN@SEN.CA.GOV

For Immediate Release                                                                                              Jeff Barbosa

Aug. 1, 2012                                                                                                              916-319-2020

“Media Advisory”

WIECKOWSKI, FREMONT FAMILY

SEEK SPINAL CORD INJURY RESEARCH FUNDS 

LEGISLATION TO FUND RESEARCH GOES BEFORE

SENATE APPROPRIATIONS COMMITTEE 

Sacramento – Top neurosurgeons and pioneers in the field of exo-skeletons will join Assemblymember Bob Wieckowski (D-Fremont) at a press conference in support of his legislation to provide funding for the Roman Reed Spinal Cord Injury Research Act, Monday, Aug. 6 at 10:30 a.m. in the state Capitol, Room 317.  Wieckowski’s bill, AB 1657, will be before the Senate Appropriations Committee later that day. 

“My office has received emails from disabled individuals across the world because people living with paralysis know that California is on the cutting edge of research and the work being done here in our universities and research labs will have a profound effect around the globe,” Wieckowski said.  “There are 650,000 Californians with paralysis and this bill can move us closer to new discoveries that can improve their quality of life.”

Since its creation in 2000, the Roman Reed Spinal Cord Injury Research Fund has received $17 million in state funds and leveraged that amount with $89 million in federal funds.

“The program provides key grants for neuroscientists and other medical professionals to undertake important research projects,” Wieckowski said.  “By tapping into some of the best minds in the field, we can not only give hope to people, but maintain California’s leadership in the biosciences.”

Roman Reed became paralyzed while playing football at Chabot College in Hayward.  He has since become a Fremont Planning Commissioner and a nationally known advocate for spinal cord injury research. He and his father, Don, have roamed the halls of the Capitol lobbying for the bill and have testified before committees to sustain the program.  The Roman Reed Spinal Cord Injury Research Fund is run through the University of California and administered out of the Reeve-Irvine Research Center at the University of California, Irvine. 

AB 1657 is supported by Lt. Gov. Gavin Newsom, the University of California, leading biotech organizations such as BayBio and the California Healthcare Institute, and several top neuroregenerative researchers across the state.  

Ekso Bionics, a Richmond, CA-based company will show its exoskeleton at the press conference.  The Ekso is a portable bionic exoskeleton designed to help patients with lower-extremity paralysis or weakness stand up and walk.

WHO:             Assemblymember Bob Wieckowski, Dr. Graham Creasey (Stanford School of Medicine), Dr. Stephen L. McKenna (Santa Clara Valley Medical Center – Rehabilitation Trauma Center), Kolbeinn Bjornsson (EksoBionics Senior Vice President), Roman Reed (Roman Reed Spinal Cord Injury Research Fund), Don Reed, citizen-sponsor, Roman Reed Spinal Cord Injury Research Act.   

WHAT:           Press Conference on Assembly Bill 1657.

WHERE:        Room 317, State Capitol, Sacramento, CA

WHEN:           10:30 a.m., Monday, August 6, 2012

 

 

 

 

 

 

 

 

 

 

 

 

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