Sent petitions to local congressmen

[Guest guest]

Just wanted to let you know that 10 different senators/assemblymen in the

Central New York region will be receiving (this coming week) copies of both

petitions along w/a letter from me requesting their support. I covered the

Syracuse & Utica area.

One other question--I was telling my mom about the petitions & reading various

portions over the phone to her. She was curious about the CJD victims that had

brain biopsy's--she wanted to know if most people had them done at NIH or if

they were done by the routine people that do them in their city.

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[Guest guest]

My friend 's family gave permission for research to be done at various

places that requested.

[Guest guest]

<< She was curious about the CJD victims that had

brain biopsy's--she wanted to know if most people had them done at NIH or if

they were done by the routine people that do them in their city.

>>

:

You go girl!!!! That's what we need! To answer your question regarding

biopsies.... Dad's was done at the VA hospital where he was admitted. After

his death, I did approve to have the tissue blocks sent to NIH but I don't

think they were ever transfered.

Liz.

[Guest guest]

,

Good job on the petitions!!

As to your other question, my Mom did not have a brain biopsy while she was

alive, but after her death, her body was sent to the hospital in Boston where

she was diagnosed for removal of her brain tissue (what was left of it) and

they sent it to Dr Gibbs at the NIH. He has it now and told me the other day

that it " was fully involved " . Yuk.

Sheryl

[Guest guest]

Leila -

Just wanted you to know that our family gave permission for tests to be run

wherever the pathologists at University of Colorado Med Center wanted to

send them. Included Case Western Reserve University and NIH. No brain

biopsy was done prior to my father's death.

Shar

----------

>

> To: cjdvoice (AT) onelist (DOT) com

> Subject: Sent petitions to local congressmen

> Date: Saturday, January 09, 1999 8:23 PM

>

>

>

> Just wanted to let you know that 10 different senators/assemblymen in the

> Central New York region will be receiving (this coming week) copies of

both

> petitions along w/a letter from me requesting their support. I covered

the

> Syracuse & Utica area.

>

> One other question--I was telling my mom about the petitions & reading

various

> portions over the phone to her. She was curious about the CJD victims

that had

> brain biopsy's--she wanted to know if most people had them done at NIH or

if

> they were done by the routine people that do them in their city.

>

>

>

> ____________________________________________________________________

> More than just email--Get your FREE Netscape WebMail account today at

http://home.netscape.com/netcenter/mail

>

> ------------------------------------------------------------------------

>

[Guest guest]

In a message dated 1/9/99 9:23:11 PM Central Standard Time,

LeilaLeigh@... writes:

<< One other question--I was telling my mom about the petitions & reading

various

portions over the phone to her. She was curious about the CJD victims that

had

brain biopsy's--she wanted to know if most people had them done at NIH or if

they were done by the routine people that do them in their city.

>>

,

My mother-in-law had her biopsy at our county hospital, where she was for her

entire illness. They had spent about 2 weeks ruling out everything else, and

definitively diagnosed CJD with the biopsy. But this was 1973, when there was

no other test available. They wanted to do an autopsy when she died, but my

father-in-law would not consent to it. He had been through so much at that

point. I find it surprising that her diagnosis and care 25 years ago was just

as good, and in some cases better, than what some of our Voice members

describe today. I guess we were very lucky, but it didn't feel that way at

the time.

Yvette