ROUND FIVE: BRAIN Progress Report

Government Shutdown has Halted Obama's 

$100 Million BRAIN Initiative.

That's the latest as of Tuesday. Here's where things stood on Monday:

Create your own mind maps at MindMeister

ROUND THREE: BRAIN Power

On July 14th, Charlie Rose and Eric Kandel led a panel discussion involving four of the neuroscientists who've been charged with leading our nation's new BRAIN Initiative. Here's some of what was said -- slightly paraphrased here and there -- that may be of special significance to the CP community. I've embedded the full video recording at bottom.

Participants: Eric Kandel [EK] of Columbia University, Thomas Insel [TI] of the National Institute of Mental Health, Story Landis [SL] of the National Institute of Health, Cornelia Bargmann [CB] of Rockefeller University and William Newsome [WN] of Stanford University.

EK: 

The overall purpose of the Initiative is to understand the normal human brain, but it's inconceivable that studying it wouldn't have fantastic spin-offs for things like Alzheimer's...   (and CP; which he didn't mention explicitly, but implied)

It'll take fifty to one hundred years for us to have a complete understanding of the human brain.

At every point, we're going to make progress -- which will ultimately benefit clinical neurology.

Ten to twenty years from now we'll be at a different level from where we are now, in terms of the treatments for neurological disorders that are available.

TI: 

The Initiative is not about entirely solving the problem of understanding the brain, it's about developing the tools to help us address it in new ways. It's about developing the next generation of tools to help the science flourish even more. 

I believe deeply that disorders of the mind can be understood biologically -- as circuit problems -- and that this project could ultimately give us the tools with which to improve diagnosis and develop new treatments. And that would be transformative.

WN:

It's about being able to make wiser recommendations to NIH (National Institutes of Health) about where to invest to really drive things forward. 

It's about developing tools to allow us to identify and treat different disease states much more specifically than we currently can.

A key exchange:

Charlie Rose: Help me understand, too: There's not a focus in this initiative on understanding diseases of the brain? 

EK: Not a direct focus. 

CB: Let's try and figure out enough about the brain in general, its groundwork, and use it to apply to all brain disorders it might be relevant to. We're trying to turn on lights here that will illuminate the broad realm of brain disorders (be they degenerative, developmental, or psychiatric) and the normal brain.

Ending on the most optimistic of notes --

SL: 

I think there are likely to be early wins for neurological disorders. 

With regard to epilepsy, we will get out of these studies a better way to assess circuit activity...which would allow us to predict when a seizure is coming and stop it before it begins.

In the next five or more years, work stemming from the Initiative will have some practical application to diseased brains.

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ROUND ONE: It's About Time. And Space.

As far as goals go, "Knock Out CP" is a whopper. It's also about as vague as can be. But you have to start somewhere, and, recalling (as I hardly ever do) the Austrian economist and philosopher Ludwig Von Mises, at least it's ACTIONABLE in that it meets these conditions for human action. There's:

1. a sense of dissatisfaction with the way things are; 
2. an image of a better, more suitable set of conditions; 
3. the expectation that purposeful action will make a difference.

Human Action: A Treatise on Economics was published in 1949. Coincidentally, that's the same year United Cerebral Palsy (UCP) was born as a national organization -- from humble beginnings; thanks to the efforts of families dissatisfied with their lack of options and wanting to dramatically improve the quality of life for children with CP. Today there are many more and many different types of organizations, worldwide, driven by similar missions. 

They'd all like to see CP go down for the count.

Generally speaking, each is in one way or another pursuing CHANGE for the better. Implicit are the notions that (a) work has to be done to produce change, and (b) work takes time. Time is a dimension of all change.

My own particular time-sense tells that progress is being made on the CP front, but at a SNAIL'S PACE. I feel impatient. So much so that I can't wait for the Big Summer CP Conference or the next Global Get-Together. (both nonspecified) It'll take light years for the President's BRAIN initiative to get funded and bear fruit. 

I want change to happen faster, i.e., in a much shorter amount of time.

Of course, my perceptions are colored by what I want for my daughter. I want her to thrive. I want her to exult. I want her to feel better. I want her to laugh more. I want her to be able to more fully participate...

PRONTO.

*  *  *  *  *

Expressing the changes we want to see on a personal, human scale makes them more understandable; it's where the focus properly belongs. Along those lines, I believe it's our responsibility as parents to keep our perspectives, needs, and senses of urgency front and center. The goal should be to "pull" helpful goods and services to our kids, and that's the way to start. 

We need to get the various provider organizations out there moving in tune with us.

*  *  *  *  *

I'm inspired: by the enterprise and energy, by the research findings, by the roadmaps and visions. But I've also been around the block some. 

Take the inspiring visions: 

One problem with them is that they're COARSE-GRAINED. In other words, they "identify some factors of interest but ignore many details in the process." (David K. Hurst) Even relatively simpler, standalone projects typically take longer than plans anticipate (doesn't this ring true in your experience?) due to unforeseen issues on the ground, and --

Our CP-related projects-to-come aren't likely to be simple. They won't even be complicated, in the ways, say, construction or IT projects often are. They'll continue to be complex. They'll entail lots of uncertainty. Stem cell research looks promising, for example, but it may be many years before we know whether or not transplantation is even safe.*

SO WHAT? 

We're probably way underestimating the amount of ground we need to cover, i.e., the distance or space we still need to traverse. (Space is another dimension of all change.) That means we should be doing a heck of a lot more work now. There's a Planetary Powwow scheduled for 2014? We need to move it up. Can we acclerate the planning phase? Can we get crackin' in advance on the work that's likely to follow? Can we make the need to meet...moot?

These are management matters. 

I personally want to see CP knocked for a loop within one (1) calendar year. Attaching that timeframe to it is my attempt to influence, i.e., manage, things in that direction. (Whether or not it's a smart attempt remains to be seen.) It's also SPECIFIC. 

Conjecturing, on the other hand, that there's "lots and lots of work to be done" is UN-SPECIFIC. What work? How much? What are the resource requirements? Our answers to questions like these will determine the kinds of results we get.

Can leading management thinkers help in all of this? 

I hope so.

*To say nothing of what Wendell Berry wrote -- something I always keep in mind: “We live in a world famous for its ability both to surprise us and to deceive us.”