Reminder.......CJD Voice Conference

November 5, 1998

Hi Everyone...

This is an update about the CJD Voice Conference. The early registration

cut off date is zooming up on us. November 10th to get the discounted fee.

I have sent out to many researchers and interesting people to ask them to

come and talk with us. They have shown an interest but because it is too

far away as of yet they don't want to make a firm committment. I have a

feeling they will come though.

So far I have gotten back interest from....

Hansen

Lyman...He was sued with Oprah

Dealler

Dr. Tom Pringle

Claudio Soto

We have not heard back from:

Clarence Gibbs...NIH

Dr. Belay....CDC

and I am still getting letters to other researchers.

If anyone has other ideas let me know. Dr. Dealler wants the information

to put on his site and Liz is also going to put the information on our site

too.

and I have worked hard on getting this together, and we really want

it to be a success, and for it to be that, we need reservations. We are

getting the speakers interested now I need the members to be interested.

Lets put our hard feelings aside , I feel that I have, it has gone a week

now. We all are affected somehow by this disease, through growth hormones,

through blood recall notices and through the actual horrible disease. Lets

get together and meet each other, I know that I am anxious to. Lets share

stories, lets grieve together and won't it be interesting to actually talk

to these people we have only read about or seen on television. Most of all

to see everyones faces that have only been a computer screen.

I have had many, many members ask about the conference but I have only been

told of three who have made their reservations. So come on

everyone....lets do this. I'll be waiting to hear from you.

I also need to know how many are interesting in bring their children. I

had one person ask if there are going to be any activities for kids. I

have not made any plans for this because I didn't know if kids would be

coming, if so I will see what I can do. Just let me know.

Lets cheer up and go on......we want to beat CJD....it will take all of us

to do it.

Robin

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