The History of CJD Voice & Proper Referrals

[Guest guest]

To the Group:

I have given much thought to writing this email. It may be good to explain

to our old members, to our new members and also to those who really don't know

.... the background history of CJD Voice. By doing this, everyone wishing to

participate in news articles will have accurate facts when references are made

as to how and by whom CJD Voice was created.

Liz, Pat and myself " met " on the Internet. We had posted messages on health

boards saying that we had lost someone very special in our hearts to CJD.

Because we had each walked the CJD pathway ALONE with our loved one, our

primary interest and concern became to fulfill an important need ... to

develop a source of support for anyone who had already experienced or would

experience CJD.

The rest is history...CJD Voice was born to provide people with support, help

and answers from those who had experienced CJD first hand. It was also born

to increase public/medical awareness of CJD and to stir the fires for

increased research funding. CJD Voice has grown from Pat, Liz, and myself ...

to nearly 300 members now and we are making new contacts weekly. We need to

continue fulfilling the important purpose of CJD Voice ... being here to help

others.

I personally described the walk down the CJD pathway as a " Walk Thru Hell " .

For those of you who have personally never taken that walk ... you should

thank God. It is a personal experience that will be imbedded in the minds of

those of us who have taken that walk for as long as we live.

If you have walked the pathway, then offer your help, support and experience

to those who need us. People are coming to CJD Voice every week for it.

Because of walking the CJD pathway on a daily basis with my beloved husband

and having experienced all symptoms of CJD and knowing the terrible heartache

of losing a spouse to CJD, I focus primarily on helping other spouses.

For those who have not personally experienced the walk down the CJD pathway,

please help by referring any inquiry to a member who has been down the CJD

pathway. For example, if I am contacted by someone losing their mother or

father to CJD, I haven't experienced this. I would refer the contact to a

member who has experienced this specific loss.

Truly, one cannot imagine the horrors of CJD until they spend personal time

with a CJD patient. I have read many personal stories on CJD and tell you

there has been no CJD story written that can adequately depict or describe

Creutzfeldt-Jakob Disease and how it slowly destroys a wonderful, loving

person. The true scenario comes only from experiencing it personally.

Thank you....

Dolly