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Hi Edith,

I'm sorry that I've haven't responded to you message until now.  I simply
want to say thank you for your thoughtful words and empathy.

Somehow, I missed Deborah's message.  Does anyone, Deborah, still have
it, and would he/she send it to me or PIEN?

Thanks again,

Charlotte

On Fri, 7 Jun 2002 22:31:57 -0700 edith love <[log in to unmask]> writes:
> To Charlotte and Deborah,
>
> Needless to say, you have both written excellent letters.  It
> certainly
> doesn't take much to realize they have come from deep within not
> just your
> hearts but from your souls as well.   It is these letters and many
> like them
> from time to time that come to represent all of us-even those of us
> under
> the PD umbrella who are claimed by no one and who belong nowhere.
>
> I feel the depth of your anguish.  I feel the intensity of your
> pleas.  I
> feel your cries for hope.   I feel your tears as you search for a
> better
> tomorrow.  I am aware of all you feel because, joined by  millions
> of
> others, I feel that way, too.
>
> Then I  begin to wonder if, perhaps, I am becoming cynical when it
> comes to
> THE CURE.  It is like the rainbow I can see but cannot touch.  It is
> an
> illusive firefly.  It is a Mexican jumping bean.  It is just out of
> reach.
>
> Be aware that I may appear facetious, and forgive me if I play
> devil's
> advocate, but I can only hope someone will read these wonderful,
> explicit
> letters besides those who are already suffering and their caregivers
>  It's
> like the homeless on the streets.   Very few want to face the
> problem.  Then
> add that while science has progressed to 2002 and beyond, I'm afraid
> the
> only progress the majority of our leaders have made is, "How much
> was/is
> your contribution?" along with the potential for "Medieval"
> practices should
> A REAL CURE be attempted in our own country!
>
> Talk about confusion, frustration, isolation and fear!  Why we're
> being hit
> with a different media hype of a different decibel every day.  We
> are being
> bombarded until one day we'll ask ourselves, "What exactly is THE
> CURE?"
> "What is it supposed to do?"
>
> Did you ever think about all of the organizations that were
> initially
> developed to fight the PD dragon?  Except for MJF who is a newcomer,
> look at
> what's become of  the rest of these many organizations.  Regardless
> of their
> intent, they have become money pits!  If the intent and purpose of
> their aim
> was/is A CURE, why haven't these individuals/organizations swallowed
> their
> pride for the sake of health,
> THE CURE and sheer time and combined?  Think of the weight they
> could toss
> around!  Think of the potential for the pot of gold at the end of
> the
> rainbow I mentioned.   Think of the fact that under combined efforts
> maybe
> someone will care about and concentrate on QUALITY OF LIFE which
> seems to
> fade into the reality fog while one after another our conditions
> worsen or
> we are finally put to rest.
>
> No, my friends, the cure is not dependent on the NIH.  Without it
> there is
> heavy private money. THE CURE is dependent on the demise of the
> Brownbach
> bill, and the opening of stilted minds.  Let us face the reality
> that this
> need for a cure has become a power struggle for THE CURE.  It has
> become an
> economical and political plum.  Our futures depend upon the winner!
>
> In thought and mind; in caring and friendship,
> E of the headdress
>
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