Posted by tom findlay (tartan) (62.7.7.95) on June 10, 2000 at 08:34:32:
it was u.s. president dwight eisenhower
who said "plans are nothing planning is everything"
he was the supreme allied commander of ww2
i started crying in the shower this morning.
here in edinburgh scotland.
i couldn't stop, i felt so helpless.
i was crying for that little kid steve.
and thinking about all the other little CH kids.
and the rest of us. you know what i mean.
what could i say in an email to him?
how could i make him feel ok?
that question has been distressing me
and on in my mind since i saw the posting.
my own kids katy 21 and david 19
have never known me without ch.
i used to have cold sweats and still do
about "what if" they get it.
and now i know a kid whose got it. i know his name
and where he is
and the distress it must be causing.
we had a wee dicussion in elaine's chat room
last night about glaxo/welcome.
about researching ch. and finding a cure.
that billion dollar conglomerate
who hold the market and fleece clusterheads
and migraineurs the world over for millions.
-feeding our demon with their products-
they would lose millions in revenue
should some clusterhead research boffin
find the solution
i thought "get real" tom.
the only folks who will find a cure will be us!
its like believing petrol companies are seriuosly
researching a way to run cars on water
what can i tell this kid?
i would like to tell him that it might be possible
for ouch and ch.com to raise a few million themselves.
and put together their own research team
that WILL find a cure.
to fancy an idea? to big a project?
i dont think so!
cat and dog societies raise millions.
why cant we?
kids with ch is unacceptable.
look what the ouch president has done on his own!
with a little bit of perspicacity and vision.
he made a global family.
on his own back.
now he has over a thousand united clusterheads
and others who benefit.
why can't we devise a plan to facilitate and enable
the best research on the planet?
there ain't no way i'm gonna believe
that greedy conglomerate drug companies.
who hold the cost of drugs artificially high
because they own the patents, have any great urgency
in decreasing the enormous revenues they enjoy
flogging us drugs that at best give us ocassional
relief, only to purchase even more products.
ok i'm a fresher here and probably saying too much.
but i'm a 27 year ch sufferer.
i've had enough too.
i want to tell that kid something proactive.
i want to tell him that we will stop his pain
one day soon.
by finding and funding our own research team.
who will do whatever is possible to end this.
i think we could do it.
i believe we can do it.
i believe we must do it.
don't get mad at me clusterheads.
i'm upset about these kids.
and i'm in an episodic cycle just now
that's been acute for a while.
i mean well.
you know how it is sometimes.
i just sincerely believe its down to us.
nobody else. its our problem.
there are too many clever people among us now.
dj started this world group.
with a single positive step.
we could go all the way and solve it ourselves.
tom
edinburgh
scotland