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:
https://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
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