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Archive for July, 2012

WIN ONE FOR FDR–AND THE WHEELCHAIR WARRIOR IN YOUR LIFE

By Don C. Reed

One recent night in Washington DC, I saw two statues of Franklin Delano Roosevelt: one was huge, capturing the outsized spirit of the man, a green-bronze cape sweeping around him. The second was more accurately life-sized, showing a small wheelchair (then made of wood) so that you realized what the man had to endure, as he fought to lead America.

Both statues were accurate.

Franklin Delano Roosevelt was America’s only paralyzed President. He lost the ability to control his lower body due to polio, and stayed paralyzed till the day he died.

But he also performed heroically, accomplishing perhaps more than any able-bodied President in our history.

Through the crushing darkness of the Great Depression, FDR and the Democratic party wove America a safety net.

Social Security: different sections which attempted to protect the old, the poor, the sick and the unemployed ; 

Securities Exchange Commission to regulate the uncaring greed and cruelty of Wall Street; 

The Tennessee Valley Authority, which converted devastating floods to useful hydro-electricity;

These and much more were all made possible by that man in the wheelchair. 

I propose we honor FDR– or another wheelchair warrior in your life.   

There are roughly 3.3 million Americans in chairs, so chances are you know someone on wheels. 

http://www.census.gov/newsroom/releases/archives/facts_for_features_special_editions/cb10-ff13.html

For me, it’s easy. I have numerous wheelchair warrior heroes. Christopher Reeve, of course, the paralyzed Superman who made it seem so natural to take on a medical condition incurable since the dawn of man.

And people you might not know, like Karen Miner and Fran Lopes, who for almost two decades have work quietly behind the scenes to raise money for research for cure.

But my personal pick is my son, Roman Reed.

The first night after his college football accident, when he was lying in bed with his athletic career suddenly ended– he asked for a banner to be made, to hang over his bed, reading: “I CAN, I WILL, I SHALL!”

That’s Roman, and he is still the same today. In the 17 years since his neck was broken, he has never wavered, never ceased believing in the possibility of cure. He looks beyond the confines of his own self, so that the struggle of a little girl named Gwendolyn Strong, paralyzed from Spinal Muscular Atrophy, is immediate and vital to him. He knows we are in this fight together, to win or lose.

And right now, a law may be passed that would set up a modest but continue fund–for the fight against paralysis.

AB 1657 (Wieckowski, D-Fremont) would add a one dollar fine to every traffic ticket, that dollar to be set aside to fund the Roman Reed Spinal Cord Injury Research Act.

By last year’s estimates, that could mean three million dollars to try and find a cure for paralysis.

Help us pass AB 1657.

Wherever you live, a quick email cut-and-pasted to the power people would be great.  Or, if you live in their district, a phone call would be heroic.

Want some suggestions on what to say? See the sample letter just below.

 SENATE APPROPRIATIONS COMMITTEE
 
Cc: jeff.barbosa@asm.ca.gov.  (Wieckowski aide)
 
Senate Appropriations Members:
 
Senator Christine Kehoe (Chair) Room 5050, 916-651-4039
mailto:senator.kehoe@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
senator.alquist@sen.ca.gov
 
Senator Bob Dutton Room 305, 916-651-4031
senator.dutton@sen.ca.gov
 
Senator Ted W. Lieu Room 4090, 916-651-4028
senator.lieu@sen.ca.gov
 
Senator Curren Price Room 2057, 916-651-4026
Senator.price@sen.ca.gov
 
Senator Darrell Steinberg Room 205, 916-651-4006
senator.steinberg@sen.ca.gov
 
SAMPLE LETTER:

Dear Senator:
 
Please support Assembly Bill 1657 (Wieckowski, D-Fremont) which would add a $1 penalty to driving offenses, revenues to fund California’s Roman Reed Spinal Cord Injury Research Act of 1999.
 
America has 1.275 million citizens with spinal cord injuries, and a total of 5.6 million paralyzed from all causes, meaning about one in fifty neighbors paralyzed.  California shares roughly 11% of this financial and physical burden.
http://unite2fightparalysis.org/paralysis_sci_faq_s__2

The cash costs of paralysis are staggering. Initial expenses for a newly paralyzed individual may run as high as $985,774 for the first year alone, with lifetime costs of $4,373,912–or as “low” as only $321,720 for the first year, and $1,031,394 lifetime.
 http://sci.rutgers.edu/forum/showthread.php?t=173916&page=2

The suffering? Incalculable.
 
The program does not focus on stem cells, although it would cooperate with California’s ground-breaking stem cell program on specific projects. But the Act exists specifically for spinal cord injury. Of 129 projects completed in the program’s history, only 9 involved stem cells.

Areas of concern include: incapacitating pressure sores; potentially fatal blood pressure irregularities; temperature control issues so that a person can be shaking with cold in blasting heat; bowel, bladder, and sexual dysfunction; and chronic pain.
 
Run by the University of California system, with headquarters at UC Irvine, the RR Act provides seed money funding up and down the state, from San Diego to Humboldt. The respect accorded to the program may be judged by the fact that it was twice renewed by near-unanimous vote of Assembly and Senate.
 
The traffic ticket funding source is connected to the injury: bad drivers put us all at risk of car crash, a major cause of spinal cord injury. Eight U.S. states operate similarly-funded programs.    

The program deserves California’s continuing support. Small but mighty, it has:
 
•        Funded stem cell research leading to the world’s first clinical trials;
•        Developed robotic equipment to systematize rehabilitation for paralytics;
•        Turned $14 million California dollars into $78 million via out-of-state grants;
•        Published 175 scientific papers, a small library of spinal cord injury research;
•        Invented a new Petri dish, (patent pending) to replace an expensive machine–
      and much more.

We’re almost there. The bill has passed four committees already. Before us now is only the Senate Appropriations Committee, the full body of the Senate, and Governor Jerry Brown himself.

Help us win: help us cure paralysis in our lifetime. Support AB 1657.

Do it for FDR, or Christopher Reeve, or Roman Reed– or your personal friend in a chair.

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APOLOGY

Unfortunately, I spectacularly misspelled California Senator Michael Rubio’s name in this morning’s  article. It was MICHAEL Rubio of Bakersfield whose key vote saved our bill–AB 1657– and with it the funding for the Roman Reed Spinal Cord Injury Research Act. The bill itself is not out of the woods, another major committee hearing, Appropriations, plus the full Senate vote, plus the Governor’s approval, if we can earn it– but we would have died on Tuesday if not for the vision and forethought of Michael Rubio.

To my incredible embarrassment, I attributed MICHAEL Rubio’s vote to Marco Rubio, which is the name of the Florida Republican who opposes the research.

I will be putting this apology both on my personal website, http://www.stemcellbattles.com, as well as on the great Daily Kos website where the piece ran this morning.

Again,my profound apologies to California Senator MICHAEL RUBIO of Bakersfield.

Sincerely,

Don C. Reed

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THE AGONY AND THE ECSTASY, by Irving Stone, describes the creative process of Michaelangelo, as he painted the Sistine Chapel. Put a small change in the last word, making it “exhaustion”, and you have a pretty good description of politics as well.

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This Tuesday, a vote will be held in Sacramento: to allow the Roman Reed Spinal Cord Injury Research Act to go forward, or not.

So near, and yet so far… 9 members of the Transportation and Housing committee voting, and we need 5 for the bill to stay alive. What is one person is in a bad mood that day? It is so easy to say no!

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Unless America wants a legislative disaster akin to the sinking of the Titanic, a North Dakota Senate win is crucial this November.

Assume a nightmare: if Republicans keep control of the House of Representatives, and turn just four seats from red to blue in the Senate, they will control the entire legislative branch.

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Mon Jun 04, 2012 at 03:36 AM PDT

California Counts Votes on Paralysis Cure Bill

by diverdonreed

What could be better than bipartisan cooperation, Democrats and Republicans working together for the common good– does not the eagle need two wings to fly?

Sadly, today’s Republican leader appears to think otherwise: opposing all things Democrat.  The “new and improved” GOP seems barely willing to stand with Dems for the Pledge of Allegiance. I can almost hear Tea Party-ites grumbling, “We don’t support Big Government!”

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Fri Jun 01, 2012 at 04:59 AM PDT

Give Scott Walker his Walking Papers!

by diverdonreed

There are moments in life when one can either fly, or be stuck in the mud forever.

Tuesday, June 5th, is just exactly such a day.

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“People must fight for each other,” said the lady in the elevator.

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Wed May 02, 2012 at 09:42 AM PDT

CONTACT THE CHAIRMAN–fight paralysis today!

by diverdonreed

Tomorrow I make the trek to Sacramento again, to knock on doors and explain to whoever will listen the importance of supporting research to cure paralysis– I could use your  backup with a quick and easy e-mail!  Thanks!!!

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Thu Apr 26, 2012 at 09:47 AM PDT

Paralysis Cure Bill Advances, Danger Ahead

by diverdonreed

Sometimes the words of a child can be so direct and honest, that it shakes your world…

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Tue Mar 20, 2012 at 10:18 AM PDT

Paralysis Cure Bill Back on Track!

by diverdonreed

Sometimes, in the midst of that is gloomy and dark, a shining ray of light appears, that warms the soul.

The law named after my paralyzed son, California’s Roman Reed Spinal Cord Injury Research Act, had its funding removed– but now– get ready for some good news!

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Should a President criminalize research which might return vision to the blind?

The four leading Republican candidates apparently think so.

Read on.

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Mon Jan 23, 2012 at 02:50 PM PST

Join Us Tuesday!

by diverdonreed

It’s not too late! If you are going to be in Northern California, and you would like to support stem cell research, join us– it will be important….

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