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The Day Before the Fourth of July, Fight for Freedom -- From Paralysis

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

Whether caused by stroke, spinal cord injury, multiple sclerosis, muscular dystrophy, Parkinson's, Alzheimer's, Lou Gehrig's disease (ALS), spinal muscular atrophy or another condition, paralysis is far more common than generally realized. Endured by 5 and a half million Americans -- nearly 2 percent of the population -- paralysis is a drain on the family and the economy as well as the individual.

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

A.B. 714 (sponsored by California State Assemblyman Robert Wieckowski, D-Fremont) would provide $1 million annually for the Roman Reed Spinal Cord Injury Research Act of 1999, partially restoring its original funds.

For 10 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 -- in 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 of the effort (four of 129 projects). 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 or her first grant was 36; today it's 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 Wieckowski and the backing of patient advocate groups like Unite2FightParalysis; friends in the biomed community like the California Health Institute; and 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 that 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, Gov. 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, $2 million a year from the General Fund. The Assembly Appropriations committee OK'd us for half: $1 million a year.

The entire Assembly voted on our bill and approved it 64 to 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.

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

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