Re: another death from cjd in Ca.

[Guest guest]

Received a private email from a young woman in Torrance, Ca. Her sister

died in Sept. 97 and symptons started in June of 97. Diagnosid at UCLA.

Inherited although no one else has died in the family. Initial symptoms

included insomnia, depression, inability to speak and unsteadiness. Dementia

and shaking followed.

I would like to send her next email but am not sure if I erase her address

that it will not be on the email. ????

Gloria

[Guest guest]

In a message dated 11/1/98 5:31:10 PM Pacific Standard Time, GlowUSA@...

writes:

Gloria, just forward it. It is much easier. Add her address to your address

book and you won't lose it..

Thanks Gloria, for everything. I take it you can now get into the CJD Watch

site?

Great!!!

I put a page up on Geocities with a link to the new site. I will let it sit

that way for a while.....

Barbara

<< would like to send her next email but am not sure if I erase her address

that it will not be on the email. ???? >>

[Guest guest]

I haven't tryed getting on watch tonight. I still get my mail on the onelist.

I think I mailed this girl's letter wrong. I'm not worried about her address,

i just wanted her letter to get on onelist without HER EMAIL ADDRESS.

Gloria

[Guest guest]

Gloria,

Email her yourself. Tell her about CJD Voice. Ask her if she would like to

have someone from the group contact her. We have members who have familial

CJD and would be willing to answer her questions. You can also refer her to

Dr. Gibbs. He also will answer any questions she

has........................Pat

[Guest guest]

She is not interested in joining. She said she has joined for a week or so

and there was too much mail. She wants to stay private. She had talked to

some one on the site before. She does check the site once in a while.

I did tell her that we are here for her, any time.

Gloria

[Guest guest]

Gloria,

Then I would not send her email through the group if she wants to remain

private............Pat

[Guest guest]

try cutting and pasting the text to a new e-mail, and sending it to the rest of

us in your name.

That way, her e-mail address would still remain secret.

Deacon Tony Grossenburg

jgrossenburg@...

[Guest guest]

No, I won't send through group, Pat.

Gloria