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From: TSS ()
Subject: Family fighting for answers about daughter's disease 23 year old suspect CJD
Date: April 24, 2008 at 1:45 pm PST

Reported by: Kristen Cosby
Email: kristencosby@clearchannel.com
Last Update: 4/18 9:57 pm

JACKSONVILLE, Fla. -- A family is fighting for answers about their dying
daughter.

Her family says doctors tell them 23 year old Rachel Woodard has a rare
brain disease that could be the human form of mad cow. She's been
hospitalized for five months after she started having severe seizures.

"I'm scared to death I'm going to lose my daughter," said her dad Norman
Woodard.

Rachel's family says doctors have told them she has Creutzfeldt-Jakob
Disease... or CJD.

"He said he was 99 percent positive that's what it is," said Rachel's Aunt
Loretta Mallard.

CJD can come from eating an animal diseased with mad cow. It can also hit
people completely by random.

"There is no treatment for cjd. its by definition a universally fatal
disease," said epidemiologist Roger Sanderson.

CBS47 can't confirm in Rachel has CJD. Privacy laws prevent her doctors from
talking about her health, but CJD can only truly be confirmed by a brain
autopsy.

The family says doctors are doubting their original diagnosis. Rachel's dad
wants a second opinion, but he doesn't have the power of surrogacy. Rachel
gave that to her boyfriend.

"I'm more scared of the hospitals misdiagnoses more than anything else. i'm
scared she's going to die of a misdiagnoses," said Woodard.

Rachel's boyfriend, who has power attorney, wants to protect what is left of
Rachel's privacy. He says after numerous attempts by medical experts,
Rachel's family has failed to accept or understand the true diagnosis. In
response to her family's request of a second opinion, he says Shands was her
second opinion because she was previously admitted back in December.

http://www.cbs47.com/content/topstories/story.aspx?content_id=a37723ac-599c-4d3a-a810-d4c670df9a7b&rss=1

THESE cases that have come about recently in the very young are most
disturbing.

a 22 year old last week died, she is suspect nvCJD. never left US.
PORTSMOUTH, Va. -- A 22-year-old Portsmouth woman is close to dying, and
family says doctors believe the human equivalent of Mad Cow Disease could be
the reason.

another young female suspect nvCJD that is 26 years old in Alabama, She is
in the final stages of CJD. She is at home in a hospital bed...very
skinny...and at times in the past month has had some eating and swallowing
issues. Sometimes she rallies and starts eating again. She stopped walking
at Christmas. they do not expect her to live much longer than May, since
that would be 14 months since her first major symptom of CJD (personal
communication).

AND now, a 3rd young female, 23 years old. hmmm, i am pondering about just
how long all those downers were in the school lunch program, and IS the
incubation period catching up now ??? is this a first of many more to come
???

Progress Report from the National Prion Disease Pathology Surveillance
Center April 3, 2008

Progress Report from the National Prion Disease Pathology Surveillance
Center

An Update from Stephen M. Sergay, MB, BCh & Pierluigi Gambetti, MD

April 3, 2008

Dear Member:

Once again we are writing to thank you for your continued support in
enhancing surveillance of prion diseases in the United States and to bring
you up to date on the National Prion Disease Pathology Surveillance Center
(NPDPSC).

In large part because of your support, the number of cases examined by
biopsy, autopsy and 14-3-3 protein determination has increased significantly
over the years (see Tables 1 and 2). We are now able to establish a
definitive diagnosis of prion disease in an estimated 60-70% of the cases in
the United States, a percentage which exceeds that in even some major
surveillance centers. In addition, we receive from you cerebrospinal fluid
(CSF) for 14-3-3 determination, a surrogate protein which is helpful in the
diagnosis of prion disease, probably in most if not all cases of suspected
Creutzfeldt-Jakob disease (CJD). We are making constant efforts to reach our
goal of at least 80% definitively diagnosed cases.

The major obstacle to our further increasing the autopsy rate remains the
inadequate reporting of suspected cases of CJD to the NPDPSC or to the State
Health Department, which in turn would notify us. Since you are the one
likely to request the 14-3-3 test on these cases, please include in your
request the information needed to contact you, which we will do if the test
proves positive. If your institution uses a referral laboratory to send us
the CSF, please provide your name, phone, and fax numbers to the lab, which
will in turn submit it to us along with the sample. If this information is
missing in the request accompanying the CSF sample (as it happens in about
30% of the cases), we will be unable to contact the caregiving physician.
Having your contact information would also allow us to send results directly
to you, thus reducing turnaround times. ...

snip...

Prion surveillance in cattle has been reduced by 90% (from about 470,000 to
40,000 in the U.S. in 2007 out of about 35 million cattle slaughtered).
Termination of human prion surveillance would therefore remove the second
line of surveillance, thereby eliminating prion surveillance in the U.S.
entirely. This development would be extremely worrisome in view of recent
reports that precautions to limit the spread of the prion infectious agent
may not have been followed in some slaughter houses in the U.S.
Cattle affected with bovine spongiform encephalopathy (BSE) continue to be
discovered in Canada, which has more rigorous BSE surveillance than the U.S.
At the same time, Canada imposes few limitations in the trade of potentially
prion-infectious cattle with the U.S.

snip...

Atypical forms of BSE have emerged which, although rare, appear to be more
virulent than the classical BSE that causes vCJD.

please see full text with additional comments and links @ ;

http://prionunitusaupdate2008.blogspot.com/

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

http://bse-atypical.blogspot.com/2008/03/mad-cow-disease-terminology-uk-c-bse.html

SCHOOL LUNCH PROGRAM FROM DOWNER CATTLE UPDATE

http://downercattle.blogspot.com/

SRM MAD COW RECALL 406 THOUSAND POUNDS CATTLE HEADS WITH TONSILS KANSAS

http://cjdmadcowbaseoct2007.blogspot.com/2008/04/srm-mad-cow-recall-406-thousand-pounds.html

SPECIFIED RISK MATERIALS

http://madcowspontaneousnot.blogspot.com/2008/02/specified-risk-materials-srm.html

APHIS-2006-0041-0006 TSE advisory committee for the meeting December 15,
2006

http://www.regulations.gov/fdmspublic/ContentViewer?objectId=09000064801f3413&disposition=attachment&contentType=msw8

Subject: [Docket No. FSIS-2006-0011] FSIS Harvard Risk Assessment of Bovine
Spongiform Encephalopathy (BSE)

http://www.fsis.usda.gov/OPPDE/Comments/2006-0011/2006-0011-1.pdf

[Docket No. 03-025IFA] FSIS Prohibition of the Use of Specified Risk
Materials for Human Food and Requirement for the Disposition of
Non-Ambulatory Disabled Cattle

9/13/2005

http://www.fsis.usda.gov/OPPDE/Comments/03-025IFA/03-025IFA-2.pdf

BSE; MRR; IMPORTATION OF LIVE BOVINES AND PRODUCTS DERIVED FROM BOVINES
[Docket No. APHIS-2006-0041] RIN 0579-AC01

GWs BSE MRR policy, The legal trading of all strains of TSE Globally $$$

[Federal Register: January 9, 2007 (Volume 72, Number 5)]
[Proposed Rules]
[Page 1101-1129]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr09ja07-21]

http://www.regulations.gov/fdmspublic/component/main?main=DocumentDetail&o=09000064801f8152

BSE; MRR; IMPORTATION OF LIVE BOVINES AND PRODUCTS
DERIVED FROM BOVINES [Docket No. APHIS-2006-0041] RIN 0579-AC01
Date: January 9, 2007 at 9:08 am PST

http://www.regulations.gov/fdmspublic/component/main?main=DocumentDetail&o=09000064801f3412

CJD USA RISING

*Acquired in UK
** Acquired in Saudi Arabia
*** Includes 17 inconclusive and 9 pending (1 from 2006, 8 from 2007.
**** Includes 17 non-vCJD type unknown (2 from 1996, 2 from 1997, 1
from 2001, 1 from 2003, 4 from 2004, 3 from 2005, 4 from 2006) and 36
type pending (2 from 2005, 8 from 2006, 26 from 2007).

Notes:

-- Cases are listed based on the year of death when available. If the
year of death is not available, the year of sample receipt is used.

-- Referrals: Cases with possible or probable prion disease from
which brain tissue or blood in the case of familial disease were submitted.

-- Inconclusive: Cases in which the samples were not sufficient to
make a diagnosis.

-- Non-vCJD type unknown are cases in which the tissue submitted was
adequate to establish the presence but not the type; in all cases,
vCJD could be excluded.

--
Communicated by:
Terry S. Singeltary Sr.

[In submitting these data, Terry S. Singeltary Sr. draws attention to
the steady increase in the "type unknown" category, which, according
to their definition, comprises cases in which vCJD could be excluded.
The total of 26 cases for the current year (2007) is disturbing,
possibly symptomatic of the circulation of novel agents.
Characterization of these agents should be given a high priority. - Mod.CP]

http://www.promedmail.org/pls/askus/f?p=2400:1001:6833194127530602005::NO::F2400_P1001_BACK_PAGE,F2400_P1001_PUB_MAIL_ID:1010,39963

There is a growing number of human CJD cases, and they were presented last
week in San Francisco by Luigi Gambatti(?) from his CJD surveillance
collection.

He estimates that it may be up to 14 or 15 persons which display selectively
SPRPSC and practically no detected RPRPSC proteins.

http://www.fda.gov/ohrms/dockets/ac/06/transcripts/1006-4240t1.htm

http://www.fda.gov/ohrms/dockets/ac/06/transcripts/2006-4240t1.pdf

JOURNAL OF NEUROLOGY

MARCH 26, 2003

RE-Monitoring the occurrence of emerging forms of Creutzfeldt-Jakob

disease in the United States

Email Terry S. Singeltary:

flounder@wt.net

I lost my mother to hvCJD (Heidenhain Variant CJD). I would like to

comment on the CDC's attempts to monitor the occurrence of emerging

forms of CJD. Asante, Collinge et al [1] have reported that BSE

transmission to the 129-methionine genotype can lead to an alternate

phenotype that is indistinguishable from type 2 PrPSc, the commonest

sporadic CJD. However, CJD and all human TSEs are not reportable

nationally. CJD and all human TSEs must be made reportable in every

state and internationally. I hope that the CDC does not continue to

expect us to still believe that the 85%+ of all CJD cases which are

sporadic are all spontaneous, without route/source. We have many TSEs in

the USA in both animal and man. CWD in deer/elk is spreading rapidly and

CWD does transmit to mink, ferret, cattle, and squirrel monkey by

intracerebral inoculation. With the known incubation periods in other

TSEs, oral transmission studies of CWD may take much longer. Every

victim/family of CJD/TSEs should be asked about route and source of this

agent. To prolong this will only spread the agent and needlessly expose

others. In light of the findings of Asante and Collinge et al, there

should be drastic measures to safeguard the medical and surgical arena

from sporadic CJDs and all human TSEs. I only ponder how many sporadic

CJDs in the USA are type 2 PrPSc?

http://www.neurology.org/cgi/eletters/60/2/176#535

THE PATHOLOGICAL PROTEIN

Hardcover, 304 pages plus photos and illustrations. ISBN 0-387-95508-9

June 2003

BY Philip Yam

CHAPTER 14 LAYING ODDS

Answering critics like Terry Singeltary, who feels that the U.S. under-
counts CJD, Schonberger conceded that the current surveillance system
has errors but stated that most of the errors will be confined to the older
population.

http://www.thepathologicalprotein.com/

doi:10.1016/S1473-3099(03)00715-1
Copyright © 2003 Published by Elsevier Ltd.
Newsdesk

Tracking spongiform encephalopathies in North America

Xavier Bosch

Available online 29 July 2003.
Volume 3, Issue 8, August 2003, Page 463

"My name is Terry S Singeltary Sr, and I live in Bacliff, Texas. I lost my
mom to hvCJD (Heidenhain variant CJD) and have been searching for answers
ever since. What I have found is that we have not been told the truth. CWD
in deer and elk is a small portion of a much bigger problem." ...

http://www.thelancet.com/journals/laninf/article/PIIS1473309903007151/fulltext

http://download.thelancet.com/pdfs/journals/1473-3099/PIIS1473309903007151.pdf

Diagnosis and Reporting of Creutzfeldt-Jakob Disease

Singeltary, Sr et al. JAMA.2001; 285: 733-734.

Vol. 285 No. 6, February 14, 2001 JAMA

Diagnosis and Reporting of Creutzfeldt-Jakob Disease

Since this article does not have an abstract, we have provided the first
150 words of the full text and any section headings.

To the Editor: In their Research Letter, Dr Gibbons and colleagues1 reported
that the annual US death rate due to Creutzfeldt-Jakob disease (CJD) has
been stable since 1985. These estimates, however, are based only on reported
cases, and do not include misdiagnosed or preclinical cases. It seems to me
that misdiagnosis alone would drastically change these figures. An unknown
number of persons with a diagnosis of Alzheimer disease in fact may have
CJD, although only a small number of these patients receive the postmortem
examination necessary to make this diagnosis. Furthermore, only a few states
have made CJD reportable. Human and animal transmissible spongiform
encephalopathies should be reportable nationwide and internationally.

Terry S. Singeltary, Sr
Bacliff, Tex

1. Gibbons RV, Holman RC, Belay ED, Schonberger LB. Creutzfeldt-Jakob
disease in the United States: 1979-1998. JAMA. 2000;284:2322-2323. FREE FULL
TEXT

http://jama.ama-assn.org/cgi/content/extract/285/6/733?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=singeltary&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT

http://jama.ama-assn.org/cgi/content/full/285/6/733?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=singeltary&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT

2 January 2000

British Medical Journal

U.S. Scientist should be concerned with a CJD epidemic in the U.S., as well

http://www.bmj.com/cgi/eletters/320/7226/8/b#6117

15 November 1999

British Medical Journal

vCJD in the USA * BSE in U.S.

http://www.bmj.com/cgi/eletters/319/7220/1312/b#5406

3. Prof. A. Robertson gave a brief account of BSE. The US approach
was to accord it a _very low profile indeed_. Dr. A Thiermann showed
the picture in the ''Independent'' with cattle being incinerated and thought
this was a fanatical incident to be _avoided_ in the US _at all costs_ $$$

snip...

http://www.bseinquiry.gov.uk/files/mb/m11b/tab01.pdf

Friday, March 21, 2008
Association between Deposition of Beta-Amyloid and Pathological Prion
Protein in Sporadic Creutzfeldt-Jakob Disease
Original Paper

http://betaamyloidcjd.blogspot.com/2008/03/association-between-deposition-of-beta.html

Saturday, April 12, 2008
Evidence of scrapie transmission via milk

Research articleS

http://scrapie-usa.blogspot.com/2008/04/evidence-of-scrapie-transmission-via.html

Saturday, April 12, 2008

The sheep industry's scrapie eradication efforts. American Sheep
Nor98-Like Scrapie Found in the United States
SCRAPIE: ERADICATE IT

http://nor-98.blogspot.com/2008/04/sheep-industrys-scrapie-eradication.html

NOR-98 ATYPICAL SCRAPIE USA UPDATE AS AT OCT 2007

typical scrapie transmits to primates by there NON-FORCED ORAL CONSUMPTION ;

76/10.12/4.6

http://www.bseinquiry.gov.uk/files/yb/1976/10/12004001.pdf

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=6997404&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

EVIDENCE OF SCRAPIE IN SHEEP AS A RESULT OF FOOD BORNE EXPOSURE

This is provided by the statistically significant increase in the incidence
of sheep scrape from 1985, as determined from analyses of the submissions
made to VI Centres, and from individual case and flock incident studies.
........

http://www.bseinquiry.gov.uk/files/yb/1994/02/07002001.pdf

SCRAPIE USA UPDATE MONTHLY REPORT JANUARY 2008

prepared February 20, 2008

Infected and Source Flocks

There were 27 scrapie infected and source flocks with open statuses (Figure
3) as of January 31, 2008. Two new source flocks and one new infected flock
were reported in January (Figure 4) with a total of 22 reported for FY 2008
(Figure 5). ....

snip...

Positive Scrapie Cases

As of January 31, 2008, 58 new scrapie cases have been confirmed and
reported by the National Veterinary Services Laboratories (NVSL) in FY 2008
(Figure 7). Of these, 52 were field cases and 6* were Regulatory Scrapie
Slaughter Surveillance (RSSS) cases (collected in FY 2008 and reported by
February 20, 2008). There were 8 positive cases for January which are
depicted in Figure 8. Seventeen cases of scrapie in goats have been
confirmed by NVSL since implementation of the regulatory changes in FY 2002
(Figure 9). The most recent positive goat cases were from the SAME HERD and
WERE BOTH CONFIRMED IN JANAURY 2008.

snip...

Caprine Scrapie Prevalence Study (CSPS)

CSPS was initiated in May 2007 to estimate the national prevalance of
scrapie in adult goats at slaughter. If no scrapie is found we will be able
to conclude that the prevalence in goats is greater than zero and less than
0.1 percent. AS of January 31, 2008, 2,942 goats have been sampled for
scrapie testing (1,515 in FY 2007 and 1,427 in FY 2008). Collection numbers
by quarter in FY 2008 is shown in Chart 8. To date, no goats have tested
positive for scrapie as part of this surveillance program. HOWEVER, THREE
POSITIVE GOATS have been identified this fiscal year through field
investigations. One was a clinical suspect submitted for testing and THE
OTHER TWO WERE MEMBERS OF THE OF THE BIRTH HERD OF THE CLINICAL CASE.

snip...

please see full text ;

http://www.aphis.usda.gov/animal_health/animal_diseases/scrapie/downloads/monthly_scrapie_rpt.pps

full text ;

http://nor-98.blogspot.com/

http://scrapie-usa.blogspot.com/

Transmissible Mink Encephalopathy TME

http://transmissible-mink-encephalopathy.blogspot.com/

CHRONIC WASTING DISEASE

http://chronic-wasting-disease.blogspot.com/

February 18, 2004

Preeminent Scientists Protest Bush Administration's Misuse of Science
Nobel Laureates, National Medal of Science Recipients, and Other Leading
Researchers Call for End to Scientific Abuses

Call (2MB mp3)
Washington, D.C.-Today, more than 60 leading scientists-including Nobel
laureates, leading medical experts, former federal agency directors and
university chairs and presidents-issued a statement calling for regulatory
and legislative action to restore scientific integrity to federal
policymaking. According to the scientists, the Bush administration has,
among other abuses, suppressed and distorted scientific analysis from
federal agencies, and taken actions that have undermined the quality of
scientific advisory panels.
"Across a broad range of issues, the administration has undermined the
quality of the scientific advisory system and the morale of the government's
outstanding scientific personnel," said Dr. Kurt Gottfried, emeritus
professor of physics at Cornell University and Chairman of the Union of
Concerned Scientists. "Whether the issue is lead paint, clean air or climate
change, this behavior has serious consequences for all Americans."

"Science, to quote President Bush's father, the former president, relies on
freedom of inquiry and objectivity," said Russell Train, head of the
Environmental Protection Agency under Nixon and Ford, who joined the
scientists in calling for action. "But this administration has obstructed
that freedom and distorted that objectivity in ways that were unheard of in
any previous administration."

The statement notes that while scientific input to the government is rarely
the only factor in public policy decisions, this input should be weighed
from an objective and impartial perspective. However, the administration of
George W. Bush has disregarded this principle.

"The Earth system follows laws which scientists strive to understand," said
Dr. F. Sherwood Rowland a Nobel laureate in chemistry. "The public deserves
rational decisionmaking based on the best scientific advice about what is
likely to happen, not what political entities might wish to happen."

"We are not simply raising warning flags about an academic subject of
interest only to scientists and doctors," said Dr. Neal Lane, a former
director of the National Science Foundation and a former Presidential
Science Advisor. "In case after case, scientific input to policymaking is
being censored and distorted. This will have serious consequences for public
health."

In conjunction with the statement, the Union of Concerned Scientists today
released a report Scientific Integrity in Policymaking that investigates
numerous allegations in the scientists' statement involving censorship and
political interference with independent scientific inquiry at the
Environmental Protection Agency, the Food and Drug Administration, and the
Departments of Health and Human Services, Agriculture, Interior and Defense.

One example cited in the statement and report involves the suppression of an
EPA study that found the bipartisan Senate Clear Air bill would do more to
reduce mercury contamination in fish and prevent more deaths than the
administration's proposed Clear Skies Act. "This is akin to the White House
directing the National Weather Service to alter a hurricane forecast because
they want everyone to think we have clear skies ahead," said Kevin Knobloch,
president of the Union of Concerned Scientists "The hurricane is still
coming, but without factual information no one will be ready for it."

Comparing President Bush with his father, George H.W. Bush and former
president Richard M. Nixon, the statement warned that had these former
presidents similarly dismissed science in favor of political ends, over
200,000 deaths and millions of respiratory and cardiovascular disease cases
would not have been prevented with the signing of the original Clean Air Act
and the 1990 amendments to that Act.

The statement demands that the Bush administration's "distortion of
scientific knowledge for partisan political ends must cease" and calls for
Congressional oversight hearings, guaranteed public access to government
scientific studies and other measures to prevent such abuses in the future.
The statement further calls on the scientific, engineering and medical
communities to work together to reestablish scientific integrity in the
policymaking process.

# # #
Among the statement signers are:

Philip W. Anderson*?
David Baltimore*?
Paul Berg*?
Lewis Branscomb
Thomas Eisner*
Jerome Friedman?
Richard Garwin*
Walter Kohn*?
Neal Lane
Leon Lederman*?
Mario Molina?
W.H.K. Panofsky*
F. Sherwood Rowland?
J. Robert Schrieffer*?
Richard Smalley?
Harold E. Varmus?
Steven Weinberg*?
E.O Wilson*

* National Medal of Science
? Nobel laureate

http://www.ucsusa.org/news/press_release/preeminent-scientists-protest-bush-administrations-misuse-of-science.html

ALL animals for human/animal consumption must be tested for TSE.

ALL human TSEs must be made reportable Nationally and Internationally,
OF ALL AGES. ...TSS

Terry S. Singeltary Sr.

P.O. Box 42

Bacliff, Texas USA 77518

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