conference

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>Subject: Re: Conference

>

>From: XOXOBB@...

>

>Elaine,

>

>I am glad to hear that you are coming. Welcome!

>

>I would say that our conference (get together) covers both the academic

aspect

>and the social too. With the Reserchers that will be with us I am sure

that

>we will be able to learn much from them. Everyone needs to have

questions

>ready, and I am sure many will just come up in the course of the talks.

Once

>again the Researchers that will be there are Dr. Brown...Dr.

Clarence

>Gibbs...Dr. Bernadino Ghetti...Dr. Bastian. Both Dr. Tom Pringle

and

>Dr. Gambetti said they would be glad to do phone talks if we would

like.

>Marie Kassai said that she would be glad to do a talk for us and she

can also

>tell about the WHO Conference in Geneva that she is going to attend in

March

>representing CJD Voice. BTW we invited Dr. Belay from the CDC but he

declined

>our invititation.

>

>Robin

>

>------------------------------------------------------------------------

>

January 31, 1999

What type of research is Dr. Ghetti doing on CJD? He was the one who did

the autopsy on my mother that confirmed CJD. We were never contacted by

him for a history on my mother. This seems rather strange, doesn't it?

V.

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>From: XOXOBB@...

>Message-ID: 91ddbdfa.36b4914d@...>

>Date: Sun, 31 Jan 1999 12:22:21 EST

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>Subject: Re: Conference

>

>From: XOXOBB@...

>

>Elaine,

>

>I am glad to hear that you are coming. Welcome!

>

>I would say that our conference (get together) covers both the academic

aspect

>and the social too. With the Reserchers that will be with us I am sure

that

>we will be able to learn much from them. Everyone needs to have

questions

>ready, and I am sure many will just come up in the course of the talks.

Once

>again the Researchers that will be there are Dr. Brown...Dr.

Clarence

>Gibbs...Dr. Bernadino Ghetti...Dr. Bastian. Both Dr. Tom Pringle

and

>Dr. Gambetti said they would be glad to do phone talks if we would

like.

>Marie Kassai said that she would be glad to do a talk for us and she

can also

>tell about the WHO Conference in Geneva that she is going to attend in

March

>representing CJD Voice. BTW we invited Dr. Belay from the CDC but he

declined

>our invititation.

>

>Robin

>

>------------------------------------------------------------------------

>

January 31, 1999

What type of research is Dr. Ghetti doing on CJD? He was the one who did

the autopsy on my mother that confirmed CJD. We were never contacted by

him for a history on my mother. This seems rather strange, doesn't it?

V.

>From bounce-cjdvoice--4736-vargas_l Sun Jan 31 09:24:00 1999

>Received: from [209.207.164.209] by hotmail.com (1.1) with SMTP id

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3HYIa03472 for cjdvoice (AT) onelist (DOT) com>; Sun, 31 Jan 1999 12:22:21 -0500

(EST)

>From: XOXOBB@...

>Message-ID: 91ddbdfa.36b4914d@...>

>Date: Sun, 31 Jan 1999 12:22:21 EST

>X-Mailer: AOL 3.0 for Windows 95 sub 76

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>Subject: Re: Conference

>

>From: XOXOBB@...

>

>Elaine,

>

>I am glad to hear that you are coming. Welcome!

>

>I would say that our conference (get together) covers both the academic

aspect

>and the social too. With the Reserchers that will be with us I am sure

that

>we will be able to learn much from them. Everyone needs to have

questions

>ready, and I am sure many will just come up in the course of the talks.

Once

>again the Researchers that will be there are Dr. Brown...Dr.

Clarence

>Gibbs...Dr. Bernadino Ghetti...Dr. Bastian. Both Dr. Tom Pringle

and

>Dr. Gambetti said they would be glad to do phone talks if we would

like.

>Marie Kassai said that she would be glad to do a talk for us and she

can also

>tell about the WHO Conference in Geneva that she is going to attend in

March

>representing CJD Voice. BTW we invited Dr. Belay from the CDC but he

declined

>our invititation.

>

>Robin

>

>------------------------------------------------------------------------

>

January 31, 1999

Hi ,

January 31, 1999

Hi ,

January 31, 1999

Hi ,

January 31, 1999

Sorry, Hit the wrong button.

, Which state are you located in?

He doesn't ask a history unless it come out as being familial cjd. Their

staff is too limited and they have cases they do from all around the world.

They have a total of 4 plus an office assistant and a few students. This is a

place where they need more research money.

Robin

January 31, 1999

Sorry, Hit the wrong button.

, Which state are you located in?

He doesn't ask a history unless it come out as being familial cjd. Their

staff is too limited and they have cases they do from all around the world.

They have a total of 4 plus an office assistant and a few students. This is a

place where they need more research money.

Robin

January 31, 1999

Sorry, Hit the wrong button.

, Which state are you located in?

He doesn't ask a history unless it come out as being familial cjd. Their

staff is too limited and they have cases they do from all around the world.

They have a total of 4 plus an office assistant and a few students. This is a

place where they need more research money.

Robin

January 31, 1999

Elaine, Thanks so much for the information that you sent me!

There was some info. regarding a study they did on an italian family.

I am also italian & found some similarities. I wish I could join you at that

conference but I won't be able to make it. Please let me know how it goes.

THANKS AGAIN!

e

January 31, 1999

Elaine, Thanks so much for the information that you sent me!

There was some info. regarding a study they did on an italian family.

I am also italian & found some similarities. I wish I could join you at that

conference but I won't be able to make it. Please let me know how it goes.

THANKS AGAIN!

e

January 31, 1999

Elaine, Thanks so much for the information that you sent me!

There was some info. regarding a study they did on an italian family.

I am also italian & found some similarities. I wish I could join you at that

conference but I won't be able to make it. Please let me know how it goes.

THANKS AGAIN!

e

January 31, 1999

Robin -

Yea, one of our PROBLEMS is his believability!

Shar

----------

> From: XOXOBB@...

> Subject: Re: Conference

> Date: Sunday, January 31, 1999 4:02 PM

>

> From: XOXOBB@...

>

> Either that or he was afraid to come knowing we have " problems " regarding

the

> CDC. Also I have had many people say they will be sending their

registration

> forms in...those are just the ones that I have in my hot little hands.

> As I get the forms I will send the names through. I understand that it

is

> only Jan. 31, and the registration deadline is March 31st.

>

> Robin

>

> ------------------------------------------------------------------------

>

January 31, 1999

Robin -

Yea, one of our PROBLEMS is his believability!

Shar

----------

> From: XOXOBB@...

> Subject: Re: Conference

> Date: Sunday, January 31, 1999 4:02 PM

>

> From: XOXOBB@...

>

> Either that or he was afraid to come knowing we have " problems " regarding

the

> CDC. Also I have had many people say they will be sending their

registration

> forms in...those are just the ones that I have in my hot little hands.

> As I get the forms I will send the names through. I understand that it

is

> only Jan. 31, and the registration deadline is March 31st.

>

> Robin

>

> ------------------------------------------------------------------------

>

January 31, 1999

Robin -

Yea, one of our PROBLEMS is his believability!

Shar

----------

> From: XOXOBB@...

> Subject: Re: Conference

> Date: Sunday, January 31, 1999 4:02 PM

>

> From: XOXOBB@...

>

> Either that or he was afraid to come knowing we have " problems " regarding

the

> CDC. Also I have had many people say they will be sending their

registration

> forms in...those are just the ones that I have in my hot little hands.

> As I get the forms I will send the names through. I understand that it

is

> only Jan. 31, and the registration deadline is March 31st.

>

> Robin

>

> ------------------------------------------------------------------------

>

February 1, 1999

I'm in Illinois, Chicagoland area. On the report it said it was genetic.

Is that considered familial??

>From bounce-cjdvoice--4744-vargas_l=hotmail.com (AT) onelist (DOT) com Sun Jan 31

18:09:01 1999

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>From: XOXOBB@...

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>Date: Sun, 31 Jan 1999 21:06:10 EST

>X-Mailer: AOL 3.0 for Windows 95 sub 76

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>Subject: Re: Conference

>

>From: XOXOBB@...

>

>Sorry, Hit the wrong button.

>, Which state are you located in?

>

>He doesn't ask a history unless it come out as being familial cjd.

Their

>staff is too limited and they have cases they do from all around the

world.

>They have a total of 4 plus an office assistant and a few students.

This is a

>place where they need more research money.

>

>Robin

>

>------------------------------------------------------------------------

>

February 1, 1999

Elaine,

You are so right about the Researchers learning from us. Dr. Ghetti was very

open to the things I was telling him about what we have learned on the group

and even went so far as to say he was getting enlightened too. I then really

realized that the research group have not seen what we see. They just get the

end result of the brains, not the living loved one that we had. They were

surprised at the stories I told of what hard times some go through with the

funeral homes, autopsies etc. Yes, we have much to give them too. If we work

together something will come of it.

Robin

February 1, 1999

Hi ,

I am looking at my Mom's autopsy and on one of the pages at the top it says

Molecular Genetic Analysis PRNP. And it just talks about what they found from

the DNA and the screening . If you have questions call Francine Epperson.

She is very knowledgeable, can find the file. She is the Office Coordinator.

The phone number is .

Robin

February 1, 1999

What I meant when I said the CJD Foundation next year would be a

traditional " academic conference " as opposed to the more informal

get-together planned for Bloomington is that I expect there will be a

call for papers (with papers/speakers selected by a program committee

comprosed of academics), researchers will give formal presentations, the

primary audience will be researchers, pathologists, and other health

professionals, CEU credits will be offered, etc.

I'm sure we'll learn from the researchers who come to Bloomington also

(and, I hope, they from us), but they're two quite different kinds of

events. I'm looking forward to both.

Elaine

> From: XOXOBB@...

>Subject: Re: Conference

>

>Elaine,

>

>I am glad to hear that you are coming. Welcome!

>

>I would say that our conference (get together) covers both the

>academic aspect

>and the social too. With the Reserchers that will be with us I am

>sure that

>we will be able to learn much from them.

February 1, 1999

a G.,

Where CAN money (in lieu of flowers) be sent for research on CJD? We had the

same question at the time of my father's passing.

Thanks,

Pam

February 1, 1999

Thanks, I'll call this week. We have been pretty much in the dark about

the type. Hopefully she will be able to answer specific questions for

us. We had a really hard time getting a copy of the report from the

neuroligist she had at Northwestern Mem. in Chicago and when I spoke

with him about it being being genetic (before we had the results) he

downplayed our chances and referred me to a genetics counsler who told

me she knew nothing about CJD (I knew more than her).

Thank You again and I'll let you know what comes of it.

V.

>From bounce-cjdvoice--4755-vargas_l=hotmail.com (AT) onelist (DOT) com Mon Feb 1

06:46:16 1999

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(EST)

>From: XOXOBB@...

>Message-ID: ed0b4079.36b5be02@...>

>Date: Mon, 1 Feb 1999 09:45:22 EST

>X-Mailer: AOL 3.0 for Windows 95 sub 76

>Mailing-List: list cjdvoice (AT) onelist (DOT) com; contact

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>Subject: Re: Conference

>

>From: XOXOBB@...

>

>Hi ,

>

>I am looking at my Mom's autopsy and on one of the pages at the top it

says

>Molecular Genetic Analysis PRNP. And it just talks about what they

found from

>the DNA and the screening . If you have questions call Francine

Epperson.

>She is very knowledgeable, can find the file. She is the Office

Coordinator.

>The phone number is .

>

>Robin

>

>------------------------------------------------------------------------

>

February 1, 1999

Hi a,

We had as the memorials for our Mom to Hospice Hospital and to Indiana

University Med. Center for CJD. People gave around 750.00 to each one.

Unfortunatly Dr. Ghetti hasn't sent in the paperwork to Debbie to get their

name on the donation page. It is a great idea to have this information

available to people.

Robin

February 1, 1999

Robin, we did an autopsy on my mom. How old was your mom & how long did it

take to get the results? Was it enlightning? Did you find out any new info?

e

February 1, 1999

Dear Robin;

Referring to research money......In January I was sent a request asking

where some funds in " lieu of flowers " could be sent for CJD research, as

this mans brother had passed away from CJD on January 13, 1999, of CJD.

This man's family kindly requested this instead of the usual. I just got

word from the researcher saying almost $1000.00 was sent from this. I

thought it was great gifts for the family to see and to help this disease

for the future. Even though when families face this devastating time maybe

this could help all for the future.

SIncerly

a G.

----------

> From: XOXOBB@...

> Subject: Re: Conference

> Date: Sunday, January 31, 1999 6:06 PM

>

> From: XOXOBB@...

>

> Sorry, Hit the wrong button.

> , Which state are you located in?

>

> He doesn't ask a history unless it come out as being familial cjd. Their

> staff is too limited and they have cases they do from all around the

world.

> They have a total of 4 plus an office assistant and a few students. This

is a

> place where they need more research money.

>

> Robin

>

> ------------------------------------------------------------------------

>

February 1, 1999

Pam:

I am from Canada so I had referred these people to a Canadian researchers,

Neil Cashman, Westaway and Bergeron presently they are

working on the development

of a blood test for CJD, and the identification and characterization of the

prion protein receptor. As you can guess, the availability of a sensitive

and specific blood test for the disease would markedly reduce the risk and

anxiety of the blood supply. The receptor work may provide insight into

how the disease can be treated.

Center for Research in Neurodegenerative

Disease, (CRND).

6 Queen's Park Crescent,

Toronto, ON, M5S1A8. Donations could be

directed to the CJD Research Fund c/o Dr. Neil Cashman.

On CJD Voice's homepage there is a list of those donations could be sent

to. I will forward them on a separate email.

I hope this helps.

a G.

----------

> From: Pamwboys@...