Hello Francis and to all CJD Voice,
that's a very good question. i too would like to know the
answer to that. also, i still would like to know why
there is no CJD questionnaire, that ask any questions
pertaining to route/source of the CJD. why is this?
why was my CJD Questionnaire _deleted_ by you Tracie
from the _new_ CJD Foundation web site. why was this?
> > sorry but we (The Foundation) have to pull it off.
how could the CJD Questionnaire confuse anyone???
how did that interfere with Gambettie's research?
or was just getting too close to the truth.
for almost 5 years i posted to the old CJD Foundation
board and nothing i ever posted there was deleted.
the new CJD Foundation takes over, and start to regulate
the CJD information going out??? what's up here Tracie???
so why was that CJD questionnaire deleted? what is
the _new_ CJD Founation scared of? why does Gambetti
et al refuse to make CJD reportable nationally and why
does Gambetti et al _NOT_ ask CJD questions pertaining
to route and source of the agent??? i believe it is
the same reason that the FDA ceased making public the
ruminant-to-ruminant feed ban violations and GWs new
anti-terrorist policy of absolutely _NO_ information
going to the public;
Houston Chronicle 1/12/03;
SENATOR AIMS TO UPGRADE FREEDOM OF INFORMATION
TEXAS Sen. John Coprnyn says he wants to improve public access to
government records in Washington, a position that appears to put him at
odds with the Bush administration.
Cornyn, a moderate Republican who sits on the Senate Judiciary
Committee, said he'll work on legislation in the coming weeks to improve
the Freedom of Information Act.
"FOIA needs to be strenghened," he said, "We need to quicken the
turnaround time and create a mechanism that allows an indepentent, third
party to decide whether a record should be kept secret."
Echoing sentiments he expressed while serving as Texas attorney general,
Cornyn added: "I believe in a system of governement that allows consent
of the people. And people can't consent if they don't what their elected
officials are doing."
Since taking office two years ago, the Bush Administration has taken
steps to restrict access to governement information, an effort that was
accelerated in the name of national security following the Sept. 11
terrorist attacks......
now i have to go through FOIA to get mad cow feed ban
warning letters. i requested last week;
see full text here;
http://www.vegsource.com/talk/madcow/messages/9912301.html
past history of the _NEW_ CJD Foundation
Subject: Re: Tracie CJD Foundation
Date: Tue, 05 Nov 2002 14:23:02 -0600
From: "Terry S. Singeltary Sr."
To: Tracie Kedzierski
References: <3DC730DF.8010308@wt.net>
<018601c284f7$27a04a80$0a64a8c0@newportrentalguide.com>
<3DC80F1A.3090808@wt.net>
<000901c28502$fac15c00$0a64a8c0@newportrentalguide.com>
<3DC81FCA.1040403@wt.net>
<003b01c28507$3f538a60$0a64a8c0@newportrentalguide.com>i am learning the tricks of the trade;-(
either email me or just forget it.
i see nothing i am interfering with in the Foundations
surveillence for the CJD Questionnaire to be remove
from board;
Surveillance is the key to increased research, awareness and overall
ability to provide support to those affected by CJD.
We need your help!
The CJD Foundation is seeking to create a database for CJD cases from
2000 through 2002. It is our goal to document all the CJD cases in this
country. YOU can assist by participating in our special database project.
This database project has been undertaken to assist Dr. Pierluigi
Gambetti of the National Prion Disease Pathology Surveillance Center at
Case Western Reserve University. Dr. Gambetti is seeking to expand the
surveillance center in order to monitor all prion diseases nationwide.
To accomplish this goal, he is working to have Congress approve
legislation to increase appropriations for CJD surveillance in this
country. Dr. Gambetti would like to apply some of these funds to making
certain medical procedures available for all CJD patients and to
providing specially trained nurses to work with families while the CJD
patients are still alive.
Your input will greatly assist us in our ultimate goal of improving the
surveillance of CJD and other prion disease in this country. If you have
lost a loved one to CJD in years 2000/2002 and are interested in
helping, PLEASE contact our database coordinator Tracie Kedzierski
(tracie@newportrentalguide) or by phone 401-848-8354 x153 days,
401-847-7577 eves
http://cjdfoundation.org/surveillance.htm
TSS
Tracie Kedzierski wrote:
> Terry,
>
> Oh no....I've gone and pissed you off (ha ha)
> I just find it better to speak...so that nothing I write is
misinterpreted.
> It is very important to me that you understand the conflict, the
confusion,
> etc so can I call you or not? My dime ?
>
> Tracie
> ----- Original Message -----
> From: "Terry S. Singeltary Sr."
> To: "Tracie Kedzierski"
> Sent: Tuesday, November 05, 2002 2:45 PM
> Subject: Re: Tracie CJD Foundation
>
>
>
>>either mail me your explination or forget the it...TSS
>>
>>Tracie Kedzierski wrote:
>>
>>
>>>Terry,
>>>
>>>The only problem is that having it on our messageboard conflicts with
>>>
> the
>
>>>information I have on our home page about the surveillance project and
>>>
> the
>
>>>report form I send out to the families.-----it is confusing. In
>>>
> fact..I'm
>
>>>sorry but we (The Foundation) have to pull it off.
>>>
>>> I need to talk to you about this and share a number of goals the "new"
>>>Foundation has Can I call you? Please email me your number....
>>>
>>>Tracie
>>>
>>>
>>>
>>>
>>>
>>>
>>> Original Message -----
>>>From: "Terry S. Singeltary Sr."
>>>To: "Tracie Kedzierski"
>>>Sent: Tuesday, November 05, 2002 1:34 PM
>>>Subject: Re: Tracie CJD Foundation
>>>
>>>
>>>
>>>
>>>>hi Tracie,
>>>>
>>>>doing fine, thank you. about the questionnaire?
>>>>by no means am i trying to step on Dr Gambetti's toes here.
>>>>i think there is more to it than just reporting a case.
>>>>we _must_ find the source and route of spordic CJDs, and
>>>>i think a great deal of it will be from the medical/surgical
>>>>arena. i just want a questionnaire made up for _all_ victims of
>>>>human TSEs in the USA in _every_ state, and i want it reportable
>>>>in _every_ state. i am turning the heat up. hell, i'm getting
>>>>old and grey, i want to see it done before i die. will be sending
>>>>this out to many media and papers and requesting them to turn the
>>>>heat up on the Gov. you will be able to keep up with the ones
>>>>coming through the voice and if i get some that have not come
>>>>through the list, i will pass on to Dr. Gambetti if he likes.
>>>>i respect Dr. Gambetti very much and would do nothing to hender
>>>>his work or yours. i just think that this is too important of
>>>>a matter not to have one. and i think by turning the heat up,
>>>>getting to the media and pressing there buttons a bit, just
>>>>might help this get done a bit faster... hope so anyway...
>>>>
>>>>kindest regards,
>>>>terry
>>>>
>>>>Tracie Kedzierski wrote:
>>>>
>>>>
>>>>
>>>>>Hi Terry,
>>>>>
>>>>>How are you? I'm just curious about your Questionnaire ?
>>>>>
>>>>>It just was posted on the Foundation's MessageBoard without any
>>>>>introduction... and I was a bit concerned as it may cause some
>>>>>
>>>>>
>>>confusion
>>>
>>>
>>>>>with the Surveillance Project I'm doing via the Foundation for Dr
>>>>>
>>>>>
>>>Gambetti.
>>>
>>>
>>>>>Could you let me know?
>>>>>
>>>>>Tracie
>>>>>Subject: Re: Tracie CJD Foundation
Date: Tue, 5 Nov 2002 15:09:29 -0500
From: "Tracie Kedzierski"
To: "Terry S. Singeltary Sr."
References: <3DC730DF.8010308@wt.net>
<018601c284f7$27a04a80$0a64a8c0@newportrentalguide.com>
<3DC80F1A.3090808@wt.net>
<000901c28502$fac15c00$0a64a8c0@newportrentalguide.com>
<3DC81FCA.1040403@wt.net>Terry,
Oh no....I've gone and pissed you off (ha ha)
I just find it better to speak...so that nothing I write is misinterpreted.
It is very important to me that you understand the conflict, the confusion,
etc so can I call you or not? My dime ?
Tracie
----- Original Message -----
From: "Terry S. Singeltary Sr."
To: "Tracie Kedzierski"
Sent: Tuesday, November 05, 2002 2:45 PM
Subject: Re: Tracie CJD Foundation
> either mail me your explination or forget the it...TSS
>
> Tracie Kedzierski wrote:
>
> > Terry,
> >
> > The only problem is that having it on our messageboard conflicts with
the
> > information I have on our home page about the surveillance project
and
the
> > report form I send out to the families.-----it is confusing. In
fact..I'm
> > sorry but we (The Foundation) have to pull it off.
> >
> > I need to talk to you about this and share a number of goals the
"new"
> > Foundation has Can I call you? Please email me your number....
> >
> > Tracie
> >
> >
> >
> >
> >
> >
> > Original Message -----
> > From: "Terry S. Singeltary Sr."
> > To: "Tracie Kedzierski"
> > Sent: Tuesday, November 05, 2002 1:34 PM
> > Subject: Re: Tracie CJD Foundation
> >
> >
> >
> >>hi Tracie,
> >>
> >>doing fine, thank you. about the questionnaire?
> >>by no means am i trying to step on Dr Gambetti's toes here.
> >>i think there is more to it than just reporting a case.
> >>we _must_ find the source and route of spordic CJDs, and
> >>i think a great deal of it will be from the medical/surgical
> >>arena. i just want a questionnaire made up for _all_ victims of
> >>human TSEs in the USA in _every_ state, and i want it reportable
> >>in _every_ state. i am turning the heat up. hell, i'm getting
> >>old and grey, i want to see it done before i die. will be sending
> >>this out to many media and papers and requesting them to turn the
> >>heat up on the Gov. you will be able to keep up with the ones
> >>coming through the voice and if i get some that have not come
> >>through the list, i will pass on to Dr. Gambetti if he likes.
> >>i respect Dr. Gambetti very much and would do nothing to hender
> >>his work or yours. i just think that this is too important of
> >>a matter not to have one. and i think by turning the heat up,
> >>getting to the media and pressing there buttons a bit, just
> >>might help this get done a bit faster... hope so anyway...
> >>
> >>kindest regards,
> >>terry
> >>
> >>Tracie Kedzierski wrote:
> >>
> >>
> >>>Hi Terry,
> >>>
> >>>How are you? I'm just curious about your Questionnaire ?
> >>>
> >>> It just was posted on the Foundation's MessageBoard without any
> >>>introduction... and I was a bit concerned as it may cause some
> >>>
> > confusion
> >
> >>>with the Surveillance Project I'm doing via the Foundation for Dr
> >>>
> > Gambetti.
> >
> >>>Could you let me know?
> >>>
> >>>Tracie
> >>>
> >>>
> >>>Tracie, again, we all would like to know how in the
world Dr. Gambetti expects to find out how much
CJD/TSEs are in the USA population without making
CJD reportable nationally, and by refusing to ask any
questions pertaining to route and source of the agent?
what good is a CJD conference if the people that are holding
the conference are refusing to make CJD reportable Nationally,
and are refusing to ask the right questions to find route
and source of agent that is killing our loved ones?
ESPECIALLY with the new studies by Collinge et al,
that, BSE transmission to the 129-methionine genotype can
lead to an alternate phenotype which is indistinguishable
from type 2 PrPSc, the commonest sporadic CJD. how much
of the sporadic CJDs in the USA will be that sporadic CJD.
from the _new_ CJD Foundations point of view, they don't
seem to care, and will never find out by refusing to ask
the questions, and refusing to make CJDs/all TSEs reportable.
the conference will be nothing but another social gathering,
with no real answers to any of our questions. sure, everybody
likes a social gathering, get to rub elbows with the prion
gods, etc. but i am not here for a social gathering, and i
don't care what anyone thinks of me, i want answers, and
i want a CJD questionnaire and i want CJD reportable.
going and rubbing elbows and listening to their BSeee will
not get it. we must demand to make CJD reportable nationally
and to make it mandatory for a CJD questionnaire FOR ALL...
TSS
francis moon wrote:
> Hi Tracie,
> I live in Georgia and as I read the article in the Atlanta Journal today about Bill Boroski in South Carolina.and saw the cases that you mentioned here in Georgia.six cases since 2000.were all six of these cases confirmed by CDC?? I have done everything humanly possible to try and get CJD reportable in Georgia. When we were at the CJD Foundation Conference in Miami.I asked CDC (Larry) why it was not and his answer was that we only wanted numbers???
> But my question to you is.if you are working along with Dr. Gambetti.and he is working along with CDC.and Dr. Gambetti is wanting all the cases that he can get for research.why are you and Dr. Gambetti.not fighting for CJD.to be reportable?? To me..that would be the place to start. If it was reportable.all over the US..and people were aware.that there is even such a disease.out there.then.he would stand a chance .or a better chance.of getting ALL the cases that were out there.
> I am not trying to be ugly.I am just speaking from the heart.because this has been bothering me for a while now. If we really want to be honest..and we really want to help with the research.then we have to have a starting place.and to me ..the starting place.would be to have the disease.reportable.
> It just breaks my heart.every time I even hear of another case.
> Frances
> in Georgia
>
>
> [Non-text portions of this message have been removed]
>
>
> If you have any questions, problems, concerns, etc... please contact Liz at LArmstr853@aol.com, Pat at Ape826@aol.com, Dolly at DBC006@aol.com or Dorothy at DEK@provalue.net.
>
