CJD Spokesperson

[Guest guest]

Carolyn,

For a long time I thought if a " famous " person could be used as a

spokesperson for CJD we would fly with our mission. However something like this

usually happens if a " famous " person knows someone that contracted a disease or

has it him/herself. So who do we get? That's the million dollar question.

A while ago I thought of Ralph Nader. There's Tom Hanks....he tends to

speak his mind. What about Jodie , Diane Sawyer, Dan Rather, Phil Donahue?

Oprah would have been perfect, but I doubt she'd get involved with this topic

after the lawsuit. What about Goldie Hawn? If I recall awhile back someone

mentioned to me she bought the rights to a movie about a woman who died from

CJD. Whatever happened to that project? Does anyone know? We need someone

who'd highly visible, available, well spoken, knowledgeable and willing to learn

about this horrible disease and our mission.... I have always liked this

idea....Any suggestions?

Suzanne

Pat's article

I received a letter from one of our senators Shelby,Al. I wrote

requesting funds for research for CJD. He states that the Senate voted

unanimously on May 21,l997 to commit to biomedical research double the funds

over the next five years, and that he will keep our concerns in mind as funding

is considered this year. I think we should all keep pushing for more dollars

for research. I know when Aids first came to the forefront people spoke before

the Senate requesting more funds,etc. I have asked for an audience before the

Senate and am awaiting information on that. I think if we could get a national

spokesperson, such as Aids did in the person of ,etc.we might

get further. We might could all think of someone we might approach to do that,

someone well-known. Also, I plan to put ads in several of our papers to see if

anyone has a family member with CJD that might not have heard of CJD Voice or

had no access to the Internet. I think I can cover most of Atlanta. I will let

everyone know what I find out and also if I can come up with a spokesperson.

Thanks for listening to this long letter. What do you think? Carolyn W