Friday, November 30, 2007


##################### Bovine Spongiform Encephalopathy #####################

Subject: CJD CONFERENCE REPORT July 7-10, 2006
Date: October 23, 2006 at 7:40 pm PST

The 4th Annual CJD Foundation Family Conference was held in Washington D.C. at the Washington Court Hotel on July 7-10, 2006. Grants from the CDC, Pall Medical, Oddessy Health Care and a record breaking attendance made this years’ event our most successful.

We began with an informal reception Friday evening which offered family members and scientists the opportunity to renew old acquaintances or begin new friendships. Meeting in this way gave our families the chance to share their stories of love and loss in an informal environment. Representatives from the Centers for Disease Control and Prevention, the National Institutes of Health, the Food and Drug Administration and the Department of Defense also attended as our guests.

Saturday morning opened with a Memorial Service at which 52 loved ones who had died of CJD were remembered. Each name was read as a flower was placed in a vase. The vase then remained at the front of the room during the entire conference. Many thanks go to Tracy Kedzierski, Ana Betro and Wanda Culp-Lias for creating such a beautiful tribute to those whom we miss. The day continued with ten presentations by the following scientists:

Bernardino Ghetti, M.D., Distinguisher Professor, Indiana University

Pierluigi Gambetti, M. D., Director, National Prion Disease Pathology Surveillance Center

Robert Will, M. D., Professor of Neurology, University of Edinburgh, UK

Neil Cashman, M.D., Brain Research Centre, University of British Columbia

Richard Knight, M.D., Director, National CJD Surveillance Unit, UK

David Kocisko, Ph.D., NIH Laboratory of Persisten Viral Diseases

James Sejvar, M.D., Neuroepidemiologist, CDC

Michael Geschwind, M.D., Ph.D. Memory and Aging Center, University of California

Gene Major, Ph.D. National Insititute of Neurological Disorders and Stroke

Joseph Cervia, M.D., FACP, FAAP, Pall Medical

For information about the specific presentations, please contact the CJD Foundation.

Our annual banquet was help on Saturday evening. Tom Sheridan, president of The Sheridan Group was our guest speaker. The CJD Foundation is most appreciative for Tom’s continued support and enthusiasm as he encourages us in the work we carry out on Capitol Hill.

Engraved crystal awards were presented to Tom and to Dr. Gambetti as a token of our gratitude for their dedication to our work.

Following her report on the work and life of the CJD Foundation, president Florence Kranitz was also presented with a gift for her leadership, passion and the tireless hours she has dedicated to the Foundation. Wanda Culp-Lias ended the evening with her own rendition of “We Shall Overcome”.

Sunday morning we introduced our Medical Education DVD, “Confronting CJD and Other Prion Disorders.” Florence explained the reasons this project was undertaken and how it has been used thus far. The DVD was shown to the conference participants. It can be viewed on line at .

Tracy Kedzierski followed with a report about the CJD Foundation Family Questionnaire which she works tirelessly at conducting.

Pat Lillquist, Ph.D., of the New York State Department of Health reported on the surveillance and education concerning CJD that is carried out in New York State.

Deana Simpson, RN, Founder and Director of CJD Insight offered an excellent presentation of the history of CJD and encouragement for those struggling with the reality of CJD.

Don Simms of Belfast, Northern Ireland, father of Jonathan, Belfast Northern Ireland shared the powerful story of the journey his family has taken over the last five years. Hos DVD presentation outlined the facts in a dramatic DVD rendition of his fight for the right to usepentosan polysulpahte as a treatment for his then 17 year old son diagnosed with variant CJD. Jonathan is still alive five years after treatment began making him the longest living CJD patient. A father’s commitment and a son’s struggle for life were vividly presented.

During lunch on Sunday there was a special meeting for family members coping with familial CJD. Eighteen people attended and were encouraged to share their stories, concerns, questions and hopes. Our thanks to Deana Simpson for moderating the meeting and to Dr. Gambetti for offering to attend and act as advisor to this group. At the request of all who attended, we are planning to include this event again next year. From this initial meeting it was decided that Deana would host an online support group twice a month for those affected by fCJD. She hosted the first very successful group last week.

Our friends from “down under” were, as always, a welcome addition to the conference. Suzanne Solvyns, Carol Wilson and Mandy Newton offered a report on the activities of the CJD Support Group Network in Australia. They are growing considerably and are conducting more meetings in each state of Australia as well as hosting fund raising events.

Dr. Muneto Ueda, Chairman of the CJD Support Network in Japan attended this year’s conference for the first time and brought a group of four other Japanese colleagues with him. Dr. Ueda’s very comprehensive and moving presentation focused on the cases of iatrogenic CJD. In Japan the risk of iatrogenic transmission from CJD contaminated dura mater transplants is 1 in 100,000.

Ruthie George, volunteer Treasurer of the CJD Foundation reported on the “State of Affairs” of the Foundation. Her report included financials, statistics, fund raising events and other fund raising activities of the CJD Foundation.

Following a short break Linda Gregson, Executive Director of the CJD Foundation discussed grief work after a loss to CJD. Not only were symptoms of grief discussed but the common expectations during the first 3-4 years after a loss.

The formal conference concluded with an excellent Advocacy Training Session led by Rhonda Rutledge, a family member and Rick Dearborn, Chief of Staff for Senator Jeff Sessions, AL. Together they were able to help each of us understand the process of political advocacy, visits and provided tools to help make these visits successful. Monday morning many family members participated in visits to their representatives on Capitol Hill. From the evaluations, this day was very successful. For a list of the congressional requests, please go to CJD Foundation website home page and click on Advocacy and then Current Year.

> Tracy Kedzierski followed with a report about the CJD Foundation Family Questionnaire

> which she works tirelessly at conducting.

thanks tracy, glad it finally got done. we know how 'tirelessly' you must have worked ;-)

Subject: [CJDVoice] CJD FOUNDATION QUESTIONNAIRE ???(what will they find out with this ??? )

Date: Thu, 07 Nov 2002 10:10:53 -0600

From: "Terry S. Singeltary Sr."




Greetings Voice,

i send this 'CJD Foundation Questionnaire' and ask the group, what they suppose will be found out with this ???

with this questionnaire, in my opinion, they don't want to know what/where the routes and sources of CJDs in theUSA are coming from. NO WONDER they said i was interfering with there research, there research consist of _not_ finding out anything other than how it was diagnosed.

you folksjudge for yourself. maybe i'm just being an extremist as some say???

then again, maybe not...TSS



Name of Patient*:(not required; if provided, must be with express consent of family member)

Date form filled out: / / (mm/dd/yy)

Person filling out form:

Relationship of person filling out form to patient:

Location where patient died: State: County: City:

Location where patient resided: State: County: City:

Sex of patient: male female unknown

Race of patient: white African-American -- Asian/Pacific IslanderAmerican-Indian/Alaskan Native Other (please identify:Unknown

Patient's date of birth: (mm/dd/yy)

Age of patient at onset of symptoms:

Date of patient's initial symptoms: (mm/dd/yy)

Age of patient at time of death:

Patient's date of death: (mm/dd/yy)

Duration of illness: months

Was this case referred to the National Prion Disease Pathology Surveillance Center at Case Western Reserve University in Cleveland, Ohio? yes no unknown

If yes, by whom was this case referred? Pathologist -- Neuropathologist -- Neurologist Other Physician (please identify which kind:Unknown

Who made initial diagnosis of CJD or other TSE?

Pathologist - Neuropathologist - Neurologist Other Physician (please identify which kind: )Unknown

Please describe the clinical neurological presentation of the illness (list the symptoms or signs):

at onset of the illness:

during the course of illness:

Was an EEG (electroencephalogram) performed? yes -- no -- unknown

If yes,

how long after onset was the EEG performed?

how many times was the EEG performed?

can you indicate the results?

- slow periodic sharp waves (PSW)

- unilateral periodic sharp waves (LSW)

- not reported

- other

Was the cerebrospinal fluid tested for the 14-3-3 protein? yes - no -unknown

If yes, what was the result? positive - negative - unknown

Was a brain biopsy performed? - yes - no - unknown

If yes, what was the result?_____

positive for__________

negative for CJD and other TSE's ______


Was an autopsy performed? yes - no - unknown

If yes, what was the result? _____

positive for__________

negative for CJD and other TSE's______


Was the neuropathology of this case consistent with new variant CJD?
yes - no - unknown

What was the final diagnosis of this case?

___CJD, probably sporadic

___Familial (hereditary) CJD

___Iatrogenic (by infection) CJD;

please specify_______________

___Gerstmann-Strausster-Scheinker Syndrome (GSS)

___Fatal Familial Insomnia (FFI)



* I hereby give consent to the Creutzfeldt-Jakob Disease Foundation, Inc. to use the above information, including name of patient if supplied, in connection with activities to promote the research, education and awareness of Creutzfeldt-Jakob Disease and related transmissible spongiform encephalopathies.




Greetings again CJD Voice,

NOW, compare to the CJD questionnaire i sent through, and ask yourself why they ask me to remove this from internet? better yet, ask yourself why the CJD Foundationin fact did remove my questionnaire from their message board? what is it they are so afraid of that we may find out?

Subject: [CJDVoice] CJD QUESTIONNAIRE... updated version II...TSS

Date: Tue, 05 Nov 2002 12:52:52 -0600

From: "Terry S. Singeltary Sr."










A. What is the subjects SURNAME____________________________

B. What is the subjects status? ___________________________

(1=suspect/confirmed CJD, 2=hospital control (specifydiagnosis), 3=GP control).C. If the subject is a (suspect) case, are they alive on theday of interview?_____(yes or no or not applicable)

D. What is your (respondent's) name?_______________________

(first name, and surname)What is the relationship to (subject)? ________________



E. DATE OF INTERVIEW__________________________

LOCATION OF INTERVIEW_____________________

F. NAME OF INTERVIEWER________________________


A. SEX___________________

B. BIRTH DATE____________

C. BIRTH PLACE___________ (country, state, county, city)


E. MARITAL*DOMESTIC STATUS__________________

(If the subject is female and is/has been married) record the subjects maiden name if different

from current surname.

F. PRESENT HOME ADDRESS_________________________

(ALSO, If deceased, last home address, before subjectbecame ill?)

G. Is/was subject right or left handed?__________________

F. How many years of full-time education?________________


A. Has the Subject had dental treatment other than fillings:

e.g. extractions or root canal work?_________________

If yes, record a description of treatment; with dates;

Dentists name and address____________________________

B. Has the Subject ever had any operations, including eyeoperations or stitching of


(If yes, record the year, hospital and type of operation). _______________

(record total number of operations)

For each type of operation record the number of such operationsundergone, the year of the first such operation and the year of the lastsuch operation. When no such operations were undergone record 0 for thenumber of operations.

NEUROLOGIC (brain)_____________________________





TONSILS OUT?___________________________________

APPENDIX OUT?__________________________________

ever received an ORGAN TRANSPLANT, including corneal or bone marrow


kidney, liver, and other_______________________

C. BLOOD TRANSFUSION__________________________


BLOOD DONOR____________________________________

D. Has Subject ever been admitted to aHospital_______________________

E. Has Subject ever been to see psychiatrist

(reason andtreatment) _____________________

F. MEDICATIONS, has Subject taken any medications regularly, (if yes, record the date, name of the medication, the reason for taking it, and route of administration) prompt for prescription drugs, including insulin and type.




Prompt for hormone therapy or nutritional supplements including oral contraceptives and hormone replacement therapy:




Prompt for homeopathic/herbal therapy:




Prompt for eye drops



G. Has Subject ever been tested for allergy using needles?________________

H. Has Subject ever received a treatment involving a course ofinjections?


(If yes, record year, name of therapy, frequency, reason)

I. Has Subject been VACCINATED? _______________________________

(If yes, give name of vaccine, and route.)

J. Has Subject ever undergone lumbar puncture or electrical tests involving needles?


K. Has Subject ever undergone acupuncture? ____________________

L. Has Subject ever used drugs by needle? _____________________

M. Has Subject ever been tattooed, ear or body piercing of any kind?____


(indicating years of birth and death) Subjects grandparents,Subjects parents and parents siblings, Subject and siblings Subjects children.

A. From the genealogy, record whether the Subject has been married more than once?


B. Have any of the BLOOD relatives of the Subject included inthe Pedigree above died with dementia (or remain alive with dementia)?


C. Have any of these individuals been diagnosed as having Creutzfeldt-Jakob disease, and or any

other T.S.E.?_______________________________

(if so, give name, address, and apprx. date of illness)


(1=definite 2=probable 3=possible 4=unable to confirm 5=not a case)


E. Has Subject had social contact, through family, friends or work, with someone else who developed CJD?_____________________________

(record the persons name and the apprx. date of illness.)

F. Confirmation of social contact with case of CJD?____________

G. FOR NON-U.K. cases only, Has Subject lived in or visited theUnited Kingdom during the period 1980-1999?________________________

(if yes, record dat and duration of visits)


A. Has Subject ever been a vegetarian for a period of 1 year or more?

(if yes), during what period was Subject vegetarian, and did the Subject eat any meat or fish at all during this time? ______________

B. Does Subject have a history of any other dietary restrictions or eccentricities? (record apprx. dates and details of restrictions;


C. How many years did Subject eat school dinners?__________________

(give dates)

D. Has the Subject ever eaten animal food or petfood?


(If yes, record the types of food and dates)

E. How did/does the Subject like their steak cooked?________________

(1=well done 2=medium 3=medium-rare 4=rare 5=did not eat steak)

F. How often does/did Subject cut or chop up raw red meat or bones, in their work or in their home?_______________________________

G. (For each of the following food items) How often did Subject eat (food item)?

BRAIN_________________ (specify animal which organ came from)



























STEAK TARTARE (raw minced steak with raw egg) carpaccio,

CHEESE, COWS MILK (1=drinks milk/eats breakfast cereal with milk, 2=only in tea/coffee,





A. Did the Subject every HUNT, DRESS, AND EAT DEER? ____________________




(if so, list location, and year, and list any specific organs that the Subject may have considered to
be a delicacy).

B. Did the Subject share a home with:




C. Has the Subject worked or stayed for more than one week on a farm? (1=lived or worked, 2=stayed, 3=NO) If YES, did Subject work or help with;







(If yes), did Subject participate in: Treating cattle for Warble fly?______________

Dipping sheep?_________________________

Crop Spraying?________________________

(If the Subject took part in any of these activities), recorddates, places and details of the activity

including agentsused;




D. Has the Subject used any of the following;

BONE MEAL__________________

HOOF AND HORN____________

DRIED BLOOD________________

(if yes, record the item used and dates)

E. Has Subject ever DISSECTED ANIMAL EYES, for example at school?


6. RESIDENTIAL HISTORY (begin with the most recent residence and work backwards)
From(dd/mm/yy) TO(dd/mm/yy) STREET TOWN COUNTY STATE (include zip code).




(begin with most recent occupation and work backwards)




A. Has the Subject ever worked in farming, the meat industry,the pharmaceutical industry, or in a hospital?

B. Has the SUBJECT, their PARTNERS or PARENTS ever worked in thefollowing areas;


animal laboratories______________________________________________

pharmaceutical laboratories________________________________________

other research laboratories________________________________________

animal farming________________________________________________

veterinary medicine_____________________________________________

meat industry_________________________________________________

(BUTCHER'S/ABATTOIRS/RENDERING PLANTS, ETC) and or (catering other occupation involving animal products, including leather)?




*** NOTE ***

please include venison/sheep/lamb and the bovine to any of the above questions.

example=brain tanning deer/elk hide or any other topics that pertain to transmission of TSEs


example=antler velvet nutritional supplements


_any_ nutritional supplements??? name/ingredients


example=elk/deer brains ie/scrambled, sandwich or otherwise


COSMETICS-ie facial creams, eye make-up etc. name/brand/ingredients




Terry S. Singeltary Sr.
P.O. Box 42
Bacliff, Texas USA 77518

================================================== =

Subject: Re: Tracie CJD Foundation

Date: Tue, 5 Nov 2002 15:09:29 -0500

From: "Tracie Kedzierski"

To: "Terry S. Singeltary Sr."

References: <><018601c284f7$27a04a80$0a64a8c0@newportrentalguide .com><><000901c28502$fac15c00$0a64a8c0@newportrentalguide .com><>


Oh no....I've gone and pissed you off (ha ha)I just find it better to 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 ?


----- Original Message -----

From: "Terry S. Singeltary Sr."

To: "Tracie Kedzierski" S

ent: 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 message board 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. ****, 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,


>>Tracie Kedzierski wrote:> >>> >>>

Hi Terry,

How are you? I'm just curious about your Questionnaire ?

It just was posted on the Foundation's Message Board 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?


Greetings again Voice,

just what is the _new_ CJD Foundations goals witha CJD Questionnaire that asks _no_

questions about soure/route of the six variants of sporadic CJDs???


i am reminded of a few things deep throat told me years ago;


The most frightening thing I have read all day is the report of Gambetti's finding of a new strain of sporadic cjd in young people......... Dear God, what in the name of all that is holy is that!!! If the US has different strains of scrapie..... why???? than the UK... then would the same mechanisms that make different strains of scrapie here make different strains of BSE... if the patterns are different in sheep and mice for scrapie..... could not the BSE be different in the cattle, in the mink, in the humans....... I really think the slides or tissues and everything from these young people with the new strain of sporadic cjd should be put up to be analyzed by many, many experts in cjd........ bse..... scrapie

Scrape the damn slide and put it into mice..... wait..... chop up the mouse brain and and spinal cord........ put into some more mice..... dammit amplify the thing and start the damned research..... This is NOT rocket science... we need to use what we know and get off our butts and move.... the whining about how long everything takes..... well it takes a whole lot longer if you whine for a year and then start the research!!!

Not sure where I read this but it was a recent press release or something like that: I thought I would fall out of my chair when I read about how there was no worry about infectivity from a histopath slide or tissues because they are preserved in formic acid, or formalin or formaldehyde..... for God's sake........ Ask any pathologist in the UK what the brain tissues in the formalin looks like after a year....... it is a big fat sponge... the agent continues to eat the brain ...... you can't make slides anymore because the agent has never stopped........ and the old slides that are stained with Hemolysin and Eosin...... they get holier and holier and degenerate and continue... what you looked at 6 months ago is not there........ Gambetti better be photographing every damned thing he is looking at.....

Okay, you need to know. You don't need to pass it on as nothing will come of it and there is not a damned thing anyone can do about it. Don't even hint at it as it will be denied and laughed at.......... USDA is gonna do as little as possible until there is actually a human case in the USA of the nvcjd........ if you want to move this thing along and shake the earth.... then we gotta get the victims families to make sure whoever is doing the autopsy is credible, trustworthy, and a saint with the courage of Joan of Arc........ I am not kidding!!!! so, unless we get a human death from EXACTLY the same form with EXACTLY the same histopath lesions as seen in the UK nvcjd........ forget any action........ it is ALL gonna be sporadic!!! And, if there is a case....... there is gonna be every effort to link it to international travel, international food, etc. etc. etc. etc. etc. They will go so far as to find out if a sex partner had ever traveled to the UK/europe, etc. etc. .... It is gonna be a long, lonely, dangerous twisted journey to the truth. They have all the cards, all the money, and are willing to threaten and carry out those threats.... and this may be their biggest downfall...

Thanks as always for your help. (Recently had a very startling revelation from a rather senior person in government here.......... knocked me out of my chair........ you must keep pushing. If I was a power person.... I would be demanding that there be at least a million bovine tested as soon as possible and agressively seeking this disease. The big players are coming out of the wood work as there is money to be made!!!

In short: "FIRE AT WILL"!!! for the very dumb.... who's "will"! "Will be the burden to bare if there is any coverup!"

again it was said years ago and it should be taken seriously.... BSE will NEVER be found in the US!

As for the BSE conference call... I think you did agreat service to freedom of information and making some people feign integrity... I find it scary to see that most of the "experts" are employed by the federal government or are supported on the "teat" of federal funds. A scary picture! I hope there is a confidential panel organized by the new government to really investigate this thing.

You need to watch your back........ but keep picking at them....... like a buzzard to the bone... you just may get to the truth!!! (You probably have more support than you know. Too many people are afraid to show you or let anyone else know. I have heard a few things myself... you ask the questions that everyone else is too afraid to ask.)


greetings again voice,

then i remind everyone to read this;

'As implied in the Inset 25 we must not assume that transmission of BSE to other species will invariably present pathology typical of a scrapie-like disease.'


#################### ####################

Monitoring the occurrence of emerging forms of Creutzfeldt-Jakob disease inthe United States



MADCOW USDA the untold story

Wednesday, February 04, 2009

Creutzfeldt-Jacob disease presenting as severe depression: a case report

A case-control study of sporadic Creutzfeldt-Jakob disease in Switzerland: analysis of potential risk factors with regard to an increased CJD incidence in the years 2001-2004

Sunday, August 10, 2008
A New Prionopathy OR more of the same old BSe and sporadic CJD

Sunday, March 16, 2008
MAD COW DISEASE terminology UK c-BSE (typical), atypical BSE H or L, and or Italian L-BASE

HUMAN and ANIMAL TSE Classifications i.e. mad cow disease and the UKBSEnvCJD only theory JUNE 2008


Tissue infectivity and strain typing of the many variants Manuscript of the human and animal TSEs are paramount in all variants of all TSE. There must be a proper classification that will differentiate between all these human TSE in order to do this. With the CDI and other more sensitive testing coming about, I only hope that my proposal will some day be taken seriously. ...


Elsevier Editorial System(tm) for The Lancet Infectious Diseases Manuscript Draft Manuscript Number: Title: HUMAN and ANIMAL TSE Classifications i.e. mad cow disease and the UKBSEnvCJD only theory Article Type: Personal View Corresponding Author: Mr. Terry S. Singeltary, Corresponding Author's Institution: na First Author: Terry S Singeltary, none Order of Authors: Terry S Singeltary, none; Terry S. Singeltary


TSEs have been rampant in the USA for decades in many species, and they all have been rendered and fed back to animals for human/animal consumption. I propose that the current diagnostic criteria for human TSEs only enhances and helps the spreading of human TSE from the continued belief of the UKBSEnvCJD only theory in 2007.

see full text 31 pages ;

Terry S. Singeltary Sr.
P.O. Box 42
Bacliff, Texas USA 77518