I was also the UCP Poster Child when I was 4. K.
--- "J. McCarthy" <[log in to unmask]> wrote:
> When I was 4 years old, I was the "poster
> child" for
> the local UCP and played a flower in that
> year's
> telethon.
>
> Jen
>
>
> --- Salkin Kathleen <[log in to unmask]>
> wrote:
> > I get 10 meg with my ISP, so that's doable.
> Maybe
> > you and I can work on it
> > together.
> >
> > Ugh, please no UCP! I know Laura means
> well, but
> > I've got bad memories of
> > the telethons. My mum actually pulled me out
> of one
> > when I was five because
> > she didn't like the circus they put on with
> the kids
> > ("See the children
> > walking..." Nauseating.)
> >
> > Kat
> >
> > ----- Original Message -----
> > From: "Cleveland, Kyle E."
> > <[log in to unmask]>
> > Newsgroups: bit.listserv.c-palsy
> > To: <[log in to unmask]>
> > Sent: Friday, June 28, 2002 10:26 PM
> > Subject: New web site idea
> >
> >
> > > That's right, Kat! Forgot about the
> > yahoo/cpadults. Wouldn't folks need
> > a
> > > Yahoo logon to browse? My ISP (through
> > Time/Warner) will give me 15 Mb.
> > I'm
> > > thinking, though, maybe we could get a .org
> or
> > .net URL and get someone to
> > > put it on their server gratis. Laura
> suggested
> > UCP---blew coffee out my
> > > nose! Strictly personal opine here, but
> I've
> > never had one good
> > experience
> > > with UCP: either as a kid or adult. I may
> be
> > wrong, but I think most
> > adult
> > > CPers have the same view of UCP as many MD
> folks
> > have of Jerry Lewis: The
> > > French can have them both.
> > >
> > > The doctor finally called at 7:30 PM and
> > pre-released a standing script I
> > > have for breakthru pain meds on the 1st of
> each
> > month. Why couldn't he
> > have
> > > done that at 9:00 this morning?
> > >
> > > Anyway, I was envisioning something along
> the
> > lines of
> > > this:http://walden.mvp.net/~lackritz/
> > >
> > > "Granny Barb" Lackritz is a Chronic
> Lymphocytic
> > Leukemia patient (like
> > > Laura) who started her webpage because when
> she
> > was dx'ed with CLL there
> > was
> > > precious little web info related to this
> fairly
> > rare leukemia. I
> > certainly
> > > would not want it to be "Kyle's page", but
> she has
> > a boatload of links,
> > > stories, etc.
> > >
> > > There's lots of stuff already on CP,
> especially
> > for kids, but no relevant
> > > resources specific to aging and CP.
> Anecdotal
> > evidence that I've garnered
> > > pretty much says that the "system"
> (research,
> > associations, physicians,
> > > medical societies, etc.) loses interest in
> helping
> > adults. I don't mean
> > to
> > > slight anyone here, but if you are among
> the
> > "walking wounded", you're
> > > pretty much left to your own devices.
> > >
> > > By "walking wounded" (phrase is growing on
> me) I
> > mean those of us who were
> > > ambulatory and independent during our youth
> and
> > early adulthood. You all
> > > know my story: fit and athletic through my
> > mid-thirties and then Bang!
> > Ten
> > > years later I can barely get from point A
> to point
> > B.
> > >
> > > Lots of folks come to mind offhand: Bobby,
> Kat,
> > Ken, me, Rayna, the
> > > Jennifers, etc. That's just from "our"
> little
> > village. There are a lot
> > > more besides us.
> > >
> > > Sound like an idea? Kat, could you get
> back to me
> > on the Yahoo site? I
> > > would like to make sure its easily
> accessible.
> > >
> > > Thanks!
> > >
> > > -Kyle
> > >
> > > -----Original Message-----
> > > From: Salkin Kathleen
> > > To: [log in to unmask]
> > > Sent: 6/28/02 5:41 PM
> > > Subject: Re: Rough go right now...
> > >
> > > Kyle, we could always use my Yahoo site,
> cpadults.
> > And I've got website
> > > space via my ISP I can use.
> > >
> > > Kat
>
>
> =====
> TTYL,
> Jennifer
>
>
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