My visit with the neuropathologist

[Guest guest]

Hi all,

I had quite an interesting day with Dr. Ghetti. There were many

interesting topics brought up and I hope that I can remember them all.

First of all let me give you some background on him. He specializes in

familial CJD, GSS and Fatal Familial Insomnia. Terry I have up to date

information

that Dr. Ghetti has compiled and I can send it if you want. To all of you

members that are affected by some form of familial cjd I hope that you will

be able to make it to the conference. He is a very interesting and kind

man, and they are set up to talk to people with this. There is counselor

who is studied in this disease whom they tell me is very helpful.

He has gained such a reputation and rapport that he gets specimins from all

over the US and outside of it too. Mexico, Italy, Australia, etc. They do

these for the charge of postage, for them to gain research materials and

for a public service, so there is no funding coming in this way. He has a

staff of 4, plus students, and does not have large working spaces either.

The different labs are spread out through the building and are not close

together.

He would also like to see cjd a madatorily reportable disease too and has

spoken to the health department about it. That would mean that all

dementias would have to be autopsied, which would then mean they would need

a larger staff, larger work space, which then means they need more money.

He had an idea which I thought was worth a try. Soliciting funds for

research from the private sector. Large companies. Writing to them,

telling your story and about cjd in general. Telling about the research

facility that you would like the money donated to and why. Be sure to

represent this personally and not to use that CJD Voice is asking for these

donations. I plan to approach Ely Lilly and The Hulmans of the

Indianapolis Motor Speedway. It doesn't hurt to ask, all they can say is

no.

They had done two autopsies early that morning and offered to let me watch

them section off the brains, but I declined.

With the OK of Lynette and Debbie I took all the information that had been

sent through about the Dura Mater and the other surgeries that it was used

in. They were VERY interested in this and did not know that it was used

like that. I was so glad that Debbie does such good researching because

they wanted to know if I had scientifically written papers to back this up,

of which I produced. They also wanted to know if we had documention of

these surgeries and I said of course the families do but not the group. I

am not sure what they will do with this information, I will keeptouch to

find out and keep everyone informed. Hopefully this will be the start of

taking care of the dura mater problem and stopping the spread of cjd this

way. It could cut down drastically on the so called sporadic cases of cjd.

And that leads to another topic that we had a week or so ago. The term

sporadic...Dr. Ghetti likes to use the term idiopathic. Meaning a disease

of unknown causes. He believes there is an outside cause of cjd. We

talked about the beef and the " authorities " not finding any BSE in the US

but there are documented cases of scrapie and chronic wasting disease.

Like us he also doesn't agree with the one in a million figure.....It is at

least 15 years old, and the awareness is increasing for cjd too.

Now to the conference, with the caliber of researchers that have graciously

said they would come and be with us, we really need a good turn out for

this. I need to know who is planning on coming even if you don't plan to

make your reservations yet. Is there something that I am not addressing

that anyone is wondering about. A tentative agenda is:

June 13th, the evening of check-in after the meal:

A session of introductions

June 14th, the actual conference day:

We will give each speaker an hour and we will try to address all topics.

General CJD, Familial CJD, Human Growth Hormones, Blood and Blood Recalls.

We will have question and answer sessions too.

The evening meal is a do-your-own thing.

June 15th, Group morning buffet and good-byes.

Well, I think thats about it for now.

Thanks.....Robin