Re: To: ALL.........Statistics

[Guest guest]

Terry,

I think Karyn's vision for this group is one of the ways we intend to

change those statistics. She envisions our group, Pancreatitis

Association, International, filling the same sort of function that the

American Cancer Society is playing for people with Cancer. To not only

give us support, but to give us a voice with those who run those

statistics, etc. giving us the One Voice that Karyn forsees. I know

she's been getting a good relationship with the physicians and other

organizations in Indiana and I've sent her an email asking her for

advice on how I can achieve something similar here in California. I also

know Karyn is working hard at getting us a not-for profit status. I

know that others of the State representatives are also trying to work

with systems in their states. I know if we get an official brochure made

up, I'd love to pass it around to the gastroenterologist at the medical

center I work at and previous one's I've had good physician's at,

particularly UCSF, which gets a lot of the pancreatic cases in the area.

Maybe one of the things this group can do is to begin to take down

demograhics on such things as cause, etc. and not only be a Voice, but

also a central information point on such things for all medical

institutions on numbers. That doesn't mean we'd have to give out names,

but if we could collect actual statitical information on that type of

stuff, a lot of physicians my come to us to get this data. It's one of

many ideas that we, as the beginning of this growing organization can

contribute to helping all of us with this disease and maybe correct

those assumptions that physicians have. There are a lot of things we can

do if we just think of these ideas. How can we put the knowledge, that

we, the sufferers, are starting to pool here in this organization and

use it to help others beyond being a support, How can we affect those

who are not yet diagnosed, those who will be diagnosed in the years that

are coming? Let those ideas be known here, pass them on to Karyn, etc.

That is how the website, and other thing have come into being on this

board, such as the database of doctors.

Kimber

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Kimber

hominid2@...

California State Chapter Representative

Pancreatitis Association, International