Hi Everyone - It's e :-)

[Guest guest]

Hi Everyone! I'm back from California & now I'm sick (w/the flu) I've

checked ALL your messages (all 376 of them!) I didn't want to miss a thing.

I thought a vacation would help but it didn't. I still cried for my mom &

when I got back home dad & my grandparents were fighting. The ONLY 2

positive things in my life are CJDVOICE &

my job. Without these 2 things I don't think I'd be able to go on.

I just wanted to comment on a few things. (I'll try to make this as short as

possible-

I promise)

1) I love the quilt idea!! Unfortunately I'm not that talented in that

department. I've

taken several " craft " classes but haven't been too successfull with

that. I will

send some money (to contribute) - (that's the least I can do)

2) KATHY: You letter hit home (as they all do) My mother also had 2 MRI's

& 2

EEG's & of course they came out " normal "

3) I think getting a celebrity involved would be fantastic. That's a good

way of getting

the word out. I think lynn is a good idea. There was a soap

opera

star that died of " Lou Gehrigs Disease " He was on Larry King & I only

caught the

tail end of it. Maybe we could get in touch w/his wife? (just an idea)

4) Regarding getting the word out to get other people involved in this group:

I know I've mentioned this several times but I WILL send some

information to

4 of my mothers doctors. 3 of those doctors are affiliated w/ 2 of our

very well

known hospitals (Cleveland Clinic & Universtiy Hospital). I am going to

send them

info. regarding CJD (that I've printed from the internet) along with our

e-mail

address. I will tell them to have families contact us that may have

CJD.

I AM MAKING A GOAL TO DO THIS NEXT WEEK! I'll let you guys know how it

goes & if & when I hear anything back from these doctors.

If I left anyone out or any other topic that should be addressed then please

let me know.

As always, thanks so much for your support and usefull/helpful information!

e