On Wed 21 May, Bob Chapman wrote:
> Brian and Jim, I would like to add some additional thoughts to the
> discussion in regard to funding research and the Udall bill.
>
> > However, as I > read the rest of his (Walter Huegel) note, I find
> > that we are talking about Political
> > > Activism; the implication being that all that is needed to bring
> > about the > end of PD is the right actions from the Government -
> > which I presume > translates into more money for PD Research, since
> > at the end of the day that > is about the only power that a
> > government can wield against something like > PD.
>
When I wrote my first reply to Walter Huegel, I was hoping to take the
discussion beyond the bickering, into an area which I believe to be of
crucial importance. It could perhaps be titled
WHAT DO WE DO WITH THE UDALL MONEY ?
I thought I had blown it, and nobody was interested, but now we have
replies from Jim Slattery and Bob Chapman, I think thinhs are looking up!
Let's stir the pot a little:
What can we of the list do? Collectively, I think we are already doing
what we do best: Lobbying. There is one thing that you can say about the
list members, and that is that they are NEVER at a loss for words. Apart
from that, the only thing which binds us together is PD, so perhaps our
best role is as guinea-pigs? We are good at discussing our reactions to
meds, and have long ago got used to discussing our symptoms objectively
and dispassionately; what more could a researchee ask for?
What else? I mentioned the Research-oriented SPRING group, which consists
of PD sufferers and/or carers who believe strongly that effective Research
is the only sensible way forward. (You may think that that is so obvious
that it need not be said, but you would be amazed at the number of people
(Not so many PWPs this time) who believe research is a waste of money, and
the money should be used for welfare work . (Or as I see it; doing good
things to PWPs, whether they want it done to them or not)! I know; I'm
criticising a lot of very well-meaning people, myself included.- I am
Secretary and Welfare Liason Officer for the Derby branch. I see no
conflict, and I have no time for those who believe that if you are pro-
welfare then you must be anti-research.
The PDS UK sponsors about 1 million UK pounds each year to support medical
research into PD, which looks pretty trivial compared to the Udall
money (Assuming tht it passes), but that merely makes it more important to
make the right decisions.
One vital factor provided by increased funding is the ability to pursue a
more varied range of projects in parallel, rather than putting idas on
ice because there are no more funds.
Because of the limited funds, I believe that the sensible way to go is
to identify a limited number of the most promising projects, and then only
fund research efforts if they can be shown to be relevant to one or more
of the nominated projects. Note that it has only become possible to
propose or even consider this type of approach to the problem because of
the ramge and scope of the ideas that have been asked and answered in
recent months.
Here's my starter list, in no particular order : - Any more?
1) Brain cell transplants - using cultured cells.
- using non-human cells (Pig cells?)
2) Application of growth factors to encourage self-regeneration of the
brain
-- Brian Collins
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