Let's Get Motivated

[Guest guest]

Hello Everyone:

I have given a great deal of thought in writing this email to our groups

because it is important to me that each of you understands my intent.

Liz, Pat and I founded CJD Voice in approximately May 1997 to support

families during and after a CJD crisis.  We also wanted to create and make

available a discussion format on various issues surrounding CJD and other

related illnesses. Our main objectives have been:

(1) Offering support for families during and after CJD.

(2) Provide a forum for discussion of topics relating to CJD.

(3) Lobby for increased education regarding not only in the public community

but medical communities as well.

(4) Lobby for increased funding for research into CJD.

(5) Lobbying to change the state to state reporting practices of CJD to the

CDC.              

It is important for each of us to read over the above 5 objectives and see

how many of these we have been actively participating in.

Each week we have:

(1) Members who lose a loved one to CJD.

(2) New members who join our group because they have a loved one recently

diagnosed with CJD.

(3) Inquiries concerning problems with neurological symptoms/diagnosis.

We have 2 Petitions filed ... how many of us have contacted Darcy Kemnitz to

voice our support of the Petitions and add our personal experience with CJD?

How many of us have written to our elected officials, who represent us on a

State and National level, to voice our support of CJD research and the

Petitions? How many of us have written brief " thank you " messages to those

involved the Petitions work? If anyone needs any help in doing these things,

Pat, Liz and myself are always available for guidance.

The exchange of personal experiences, through group discussion, offers each

of us a means to vent our concerns and frustrations about CJD. We always

welcome this exchange. The doors are always open for group members to

exchange their personal CJD experiences and ideas. Personally, I have a very

special interest reading all of the exchanges of experiences and ideas.

While I think it is nice to question Aspartame ... it would seem that we

should close the door on Aspartame and concentrate our discussions and efforts

on our objectives. For those of us who have lost a loved one to CJD, we have

seen the horrible demon called CJD and have experienced the " Walk Through

Hell " with our loved one. We will never, ever forget the total destruction

and devastation that CJD caused in our loved one. God has left us here with

our memories and we must be motivated with the above 5 objectives always in

mind. We must also be united ... and we must not be defeated. To do this

requires participation by each of us ... are we willing to give what it takes

to get the task accomplished?

May God bless each of you and may He bless and support our CJD efforts.

Dolly