Posts Tagged ‘AB 190’

It’s a Marathon, not a Sprint

May 13, 2011

First of all, thanks to everyone who supported the effort to get AB 190 passed in California.  I’m happy to report that the committee voted 4-2 in favor of the bill; for a comprehensive analysis of the proceedings (and an insight to advocacy in action) see Don Reed’s blog here.

When Unite 2 Fight Paralysis defined its mission to educate and advocate for curative therapies, we heard the quote from many quarters, “It’s a marathon, not a sprint.”  This warning is unlikely to daunt anyone who lives with a spinal cord injury.  As we know, not only do you lose physical abilities with SCI, you also lose TIME.  Just getting up and out the door in the morning is a marathon.

Our first couple years felt like the first couple miles of a marathon.  If you’ve ever done one, when you start out the finish line seems a long ways away.  Back in 2006 and 2007, the research reports we were hearing at Working 2 Walk were mostly about basic science and the lack of any real promising therapies in the lab for spinal cord injury.  Attendees from the SCI community felt discouraged.

Team U2FP at the 2010 Finish Line - Click on the picture to support our 2011 Team

Gradually, though, the reports became more promising.  The world of stem cell research took off.  Scientists began solving some of the neurological puzzles on a molecular level, and translating their findings to potential therapies.  Science is moving out of the lab and into clinical trials.  We’ve got a couple miles under our belt now and are picking up momentum.

Just like the U2FP team that is walking in the Seattle half-marathon, we’ll go faster and have more fun if we advocate TOGETHER.  Research scientists, investors, practitioners, and community advocates must investigate, question each other, strategize, collaborate, and most importantly unite in order to reach the ultimate finish line – a cure for paralysis.


April 25, 2011

just might be the most important quality to cultivate in order to be an effective advocate.  With persistence you keep taking action even when you don’t feel motivated.  Eventually you get results, and with results comes motivation.

Two of the more persistent and effective advocates I know in the spinal cord injury community are Don Reed and Karen Miner.  They have been raising money and influencing legislation in the state of California for over 10 years.  Together they helped engineer the passage of the Roman Reed Spinal Cord Injury Research Act back in 1999.  Among other achievements, this little piece of legislation generated funding for the scientific research that eventually became Geron’s historic clinical trial.

Unfortunately funding for the Roman Reed Act became a victim of California’s state budget cuts.  Here’s where the persistence comes in.  Undeterred, supporters introduced a bill that would provide non-tax funding in the form of a $3 add-on fine to reckless drivers.

The bill, AB 190, goes before the Public Safety Committee at 9:30 am tomorrow (April 26).  It’s not too late for you to add your voice to the chorus supporting this legislation that is so important to advancing research into curing spinal cord injury.

More background information, a sample letter, and email addresses for the appropriate legislative aides are available by following this link.  Take action, see results, get motivated, and reward your persistence.

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