Re: The teenager & Newspapers

[Guest guest]

Dear Voice Friends,

This morning , Judy's partner called me. She wants to go to the

press and two major newspapers in our state want info on CJD.She was calling

for my research. I gathered all my notes and the voluminous documents I've

collected over these last two weeks, many from Terry (thank you again). I

felt such a wave of relief and energy that all this will go to the public.

confirmed to me that a hospice worker told her as well that

there is a teenager here in Eugene Oregon who has CJD. Is it nvCJD? That is

not disclosed yet. There is indeed a doctor from Mayo clinic here.

is getting many calls and many people in our community are calling Judy's

neurologist angry about his statements to the press. He was only concerned

with minimizing hysteria...

was concerned that Dr. Pringle had said that Judy was a blood

donor because to 's knowledge Judy never gave blood. However I

cautioned her that she only knew Judy for 4 years and has NO idea what Judy

did beforehand. She (as Judy's legal appointed guardian) decided to call the

blood bank here and tell them about Judy and question them as to if they have

any documentation of blood donations from her. I feel notification and recall

should DEFINATELY be done and agrees.

If that 14 year old has CJD it could mean that Eugene Oregon is the

site of the first NVCjD in the country. What a sad day for our community. And

more reason this must go to press.

, Oregon

[Guest guest]

Dear Voice Friends,

This morning , Judy's partner called me. She wants to go to the

press and two major newspapers in our state want info on CJD.She was calling

for my research. I gathered all my notes and the voluminous documents I've

collected over these last two weeks, many from Terry (thank you again). I

felt such a wave of relief and energy that all this will go to the public.

confirmed to me that a hospice worker told her as well that

there is a teenager here in Eugene Oregon who has CJD. Is it nvCJD? That is

not disclosed yet. There is indeed a doctor from Mayo clinic here.

is getting many calls and many people in our community are calling Judy's

neurologist angry about his statements to the press. He was only concerned

with minimizing hysteria...

was concerned that Dr. Pringle had said that Judy was a blood

donor because to 's knowledge Judy never gave blood. However I

cautioned her that she only knew Judy for 4 years and has NO idea what Judy

did beforehand. She (as Judy's legal appointed guardian) decided to call the

blood bank here and tell them about Judy and question them as to if they have

any documentation of blood donations from her. I feel notification and recall

should DEFINATELY be done and agrees.

If that 14 year old has CJD it could mean that Eugene Oregon is the

site of the first NVCjD in the country. What a sad day for our community. And

more reason this must go to press.

, Oregon

[Guest guest]

Dear Voice Friends,

This morning , Judy's partner called me. She wants to go to the

press and two major newspapers in our state want info on CJD.She was calling

for my research. I gathered all my notes and the voluminous documents I've

collected over these last two weeks, many from Terry (thank you again). I

felt such a wave of relief and energy that all this will go to the public.

confirmed to me that a hospice worker told her as well that

there is a teenager here in Eugene Oregon who has CJD. Is it nvCJD? That is

not disclosed yet. There is indeed a doctor from Mayo clinic here.

is getting many calls and many people in our community are calling Judy's

neurologist angry about his statements to the press. He was only concerned

with minimizing hysteria...

was concerned that Dr. Pringle had said that Judy was a blood

donor because to 's knowledge Judy never gave blood. However I

cautioned her that she only knew Judy for 4 years and has NO idea what Judy

did beforehand. She (as Judy's legal appointed guardian) decided to call the

blood bank here and tell them about Judy and question them as to if they have

any documentation of blood donations from her. I feel notification and recall

should DEFINATELY be done and agrees.

If that 14 year old has CJD it could mean that Eugene Oregon is the

site of the first NVCjD in the country. What a sad day for our community. And

more reason this must go to press.

, Oregon

[Guest guest]

:

I think it is wonderful that Judy's story is being publicized. Hopefully,

her death will not be in vain if even one person learns about CJD from the

articles. She sounds like she was a fascinating person -- I have always had

an interest in archeology. I have always believed that CJD takes only the

most brilliant, talented people.

As far as the neurologist goes, I can understand that he, as a health care

provider, has been trained to downplay situations that might cause panic;

however, in this case, the possibility of nvCJD being in this country is BIG

news! Bigger than him, bigger than anyone. The public already knows enough

about this disease to be very afraid and with fear of the unknown comes

anger. I believe we have reached a point in this country where everyone who

reads an article about CJD will immediately associate it with Britain's Mad

Cow Disease. When everyone realizes that " sporadic " CJD doesn't usually hit

younger people (and they will remember Doug McEwen and Jay Whitlock!!) the

news of a 14 year old possibly having CJD is going to rip this thing wide

open.

Terry:

I believe the truth is coming....much sooner than we anticipated.

Beverly G.