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This coming Monday, where will you be?  I will be in a small room in Sacramento, holding my breath as the fate of a bill is decided-- a bill to fund spinal cord injury research for cure. I will speechify when required, two times, three minutes each-- but mainly I will listen while a committee of Senators decide the fate of a research bill named after my paralyzed  son....

A MONDAY TO REMEMBER: Paralysis Cure in the Balance?

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

Originally posted to diverdonreed on Thu Aug 02, 2012 at 12:33 PM PDT.

Also republished by DKOMA.

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Comment Preferences

  •  Here is to hope. (3+ / 0-)
    Recommended by:
    bakeneko, Fury, mookins

    Hope that they find this cure before my disc degenerative disorder leaves me unable to walk.

    Education is a progressive discovery of our own ignorance.

    by Horace Boothroyd III on Thu Aug 02, 2012 at 12:38:51 PM PDT

  •  How well I know the pain of having a loved one (0+ / 0-)

    told they will never walk again.  I spent last summer at Denver Health, a hospital with the best surgeon and staff I've ever seen.  My niece had a rock climbing accident...she fell 300 feet...and only survived by landing on her feet.  Miraculously, she still has full use of her arms and suffered no brain damage.  But her spine is encased in a titanium cage.  It's been heartbreaking to watch this brilliant and athletic young woman come to terms with her paralysis.  And every day I pray that she will someday be able to walk again.  In the meantime, she's been an inspiration...she just completed a marathon on a hand-bike and is in training for a triathlon.  Amazing.  Thanks for what you are doing!

    Got Social Security? Thank a Democrat!

    by Fury on Thu Aug 02, 2012 at 01:11:10 PM PDT

  •  I knew this would happen eventually. (0+ / 0-)

    I republished to the wrong group.

    Education is a progressive discovery of our own ignorance.

    by Horace Boothroyd III on Thu Aug 02, 2012 at 02:18:17 PM PDT

  •  This has to happen (0+ / 0-)

    My Dad suffered a spinal cord injury 53 years ago. He didn't walk for a year; he was one of the lucky ones. Those were the days when they kept you in the hospital for a year if they needed to. He still manages to get around, but it's not easy.

    Pre-paraplegia he was an amazing roller skater. I always dream of him on skates. So does he.

    This has to happen.

    "The answer to violence is even more democracy. Even more humanity." Norwegian Prime Minister Jens Stoltenberg

    by poe on Thu Aug 02, 2012 at 03:33:47 PM PDT

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