Saturday, May 12, 2012

Advocating for a Cure

One of the questions we got asked a lot when Jason was first injured, was whether or not he would ever walk again.  In the early weeks, when we knew nothing of SCI and were buoyed by ridiculous levels of optimism (and, frankly, disbelief that any of this was happening), we would always say, "of course he'll walk again."  Honestly, I couldn't conceive of permanent paralysis, or of a world in which Jason didn't eventually regain the ability to walk.  We've come a long way since then, and now have a much better understanding of SCI and the type of recovery that can be expected.  Of all the people who experience SCI, only 1% experience full, spontaneous recovery.  If Jason were in that 1%, we would know by now.  This isn't to say he hasn't had a somewhat miraculous recovery, because he has...but he is not anywhere close to "full" recovery.  So, our answer has changed to, "Barring significant advances in medicine and science, it is improbable that Jason will walk as he did before this accident."  I think I actually have that little line memorized...Jason might be able to eventually take a few steps with a walker and his braces (which should be ready in another week or so), but it will not be a functional walk.  For most everything, the wheelchair is going to be the most efficient option for him.  This is, of course, barring "significant advances in medicine and science."  Which brings me to the real point of this ask for your help in advocating for a cure for paralysis.  SCI research is a relatively new field.  It wasn't until the late 1980s that doctors even began to try to repair the spinal cord-until then it was assumed that nothing could be done to fix it (not much was known about the cord....there's still a lot that is unknown).  Here's a quick rundown of where the science is:

  • Stem Cells:  Believed by many to be the most promising avenue of SCI research, but has not done too well in the US due to political pressure and backlash against using stem cells in research.  Most of the research is done abroad, with some of the more interesting work being done by Dr. Wise Young in China.  For information on the study that he is currently conducting (and, according to various reports, seeing real progress), go to:
  • Electric Stimulation: Rob Summers is the poster child for this route to a cure (his story can be found at  Essentially, this involves implanting an electronic stimulator on the cord, then shocking the cord into action. After the surgery, ROb required extensive PT to make his gains, but oh the gains he has made.  This is a really encouraging study!
  • Exoskeletons:  Exoskeletons are not actually a "cure," but they have the potential to help people with SCIs and other neurological conditions to walk again.  The current models would need to get quite a bit smaller before they could be used on a regular basis, but, again, a promising avenue.
Right now, there is a bill making its way through the legislative process in the CA Assembly (to read more about it, go to  Bill AB 1657 would add $1 to every traffic ticket.  This $1 (all of it) would be directed to spinal cord injury research at the University of California.  The UC has made tremendous strides and advances in SCI Research (and, for the more fiscally conservative, every $1 that CA directs to this research center, the center attracts another $4 in outside investment and research...).  If AB 1657 does not get approved, though, this research could end.  So, I'm asking you (particularly those of you who live in CA) to write an email/letter and let CA lawmakers know that this is an important issue.

Send your emails to:  (Assemblyman Fuentes is Chairman of Appropriations, which is where the bill is now) –Legislative Director for Bob Wieckowski, who is sponsoring this bill (and is the assemblyman for our hometown of Fremont)

If you'd rather write a letter, you can mail it to:
Assemblymember Bob Wieckowski, State Capitol, P.O. Box 942849, Sacramento, CA 94249-0020

All you need write is that you support AB 1657, though you are certainly free to say more than that.

Thanks for your help with this!


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