CJD Voice Conference

[Guest guest]

Hi All,

It has been an interesting two weeks in regards to the planning of the

conference. On the 26th of April and I went down to Indianapolis to

meet with Dr. Ghetti to go over the Agenda. He made a call to Case Western

and spoke with Dr. Gambetti to ask if he was able to come yet but he had an

engagement that weekend. It appears that since he didn't know me the first

time I wrote, back in October, to invite him to the conference that he didn't

take it seriously. He had only told me that they only have limited funding

so he would not be able to make it. I did think that was odd, since this

would be only 5 hours away and an easy drive for him, and know they get quite

a bit of funding. But anyway I think he was a skeptic, which I certainly

don't fault him for. I am waiting to hear if another Doctor is coming who

has written a paper on the classifications of CJD, Dr. Gambetti is his boss.

He is Piero Parchi. This would be a very good topic for us and clear up many

questions probably, or open up new ones.

I spoke with Dr. Bastian on the phone yesterday morning. He feels that he

has had an eventful week. He has been working to find a blood test and

thinks that he has come upon something, especially in detecting scrapie. For

anyone who is not familiar with Dr. Bastian he is a professor down at the

University of South Alabama. He feels that possibly bacteria of some kind

starts the process of the cells folding. He doesn't dispute the prions but

feel they are a reaction product. We have always been told that some outside

element, of which no one knows, causes this to start. He also has found

there are two antibiotics that slow the growing of the element down, but do

not kill it. They are erethromiacin and tetracycline. When they wear off it

starts going again. He will not have the paper written yet of his findings,

but plans on sharing it with us. He also feels, and this is something we

have wondered about on the group, that the immune system has something to do

with who gets cjd and who doesn't. In the case of older people it could be

when the immune system starts backing off. Dr. Bastian also feels that

families with a history of cjd could take the test, and if the element was

detected and a strong drug made to kill it, then would this take care of

it???? I then asked if pharmaceutical companies should be invited to the

conference. He said they would not pay any attention to this unless it were

written in a paper and documented, by Fall he plans on doing this. Likewise

with the sheep, as we all know there is scrapie in the US. Could they start

taking the antibiotic and wipe it out???? He has not had a chance to test

with BSE yet, has not had any specimins but is excited because he thinks some

will be coming by the end of the month.

Now on the other side of the coin.....I have been learning the politics of

the game......the Scientists who are going with the prion theory pretty much

pooh pooh Dr. Bastian and essentially ignore him. He does not get funding by

the government. He would like to see everyone get some of the money and all

work on this. My personal view, no one has come up with a treatment or a

cure, he seems to be the closest to finding something, at least by disclosing

it. I asked if he has applied for grants, and he says that the money is so

hard to come by. Since Pruisner won the Nobel Prize on Prions no money seems

to go for the other theories. We need to listen to Dr. Bastian at the

conference and decide for ourselves do we write to our Congressional People

and say this man has a viable theory it needs money to go to it, and the

other research labs too. Is there a list of research labs in the U.S. that we

can send to our Congress?

I got a letter back from Senator Lugar. He had forwarded my requests to the

FDA. They wrote back saying what the NIH supports, they were all prion

theory labs. I wonder if other labs can apply for grants to the extramural

research progam as the government calls it. Here is one of the paragraphs in

my letter....For your information, Dr. Al Kerza, an extramural program

director with NINDS, may provide information on applying for extramural

grants for the study of TSE's, and he may also direct inquiries to other NIH

institues as appropriate. Dr. Kerza may be reached by telephone at (301)

496-1431.

Also at the conference we will be having a person from the American Hospice

Foundation speak with us. They will be from the Indiana Chapter.

We will also be having Tom Pringle do a phone discussion on Sperling

Laboratories.

There will be a panel discussion on Issues Regarding Broader Awareness of

CJD. This will be with Dr. Hansen and Stauber. Again the

politics came into play here....I had to be careful how I worded this. The

petitions will most likely be spoken about here and Dr. Ghetti did not want

anything negative about the government written down with the Dr.'s Ghetti,

Brown, Gibbs, Parchi names with it. Since they are funded by the government

he didn't want a chance of any funding being taken away, and neither do we.

That is not what we are working for! Anything can be spoken about because

this is our conference but he just didn't want it in black and white.

We also my have a G. Rohwer, Ph.D., who is starting a new lab in

land come and speak with us. We will know in a couple of weeks if he

will be able to make it.

Thanks for reading this to the end!

Robin