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From: TSS ()
Subject: Alaska, Illinois and Wisconsin Add Creutzfeldt-Jakob Disease To Their Required Reportable Conditions List
Date: April 9, 2008 at 2:51 pm PST

Alaska, Illinois and Wisconsin Add Creutzfeldt-Jakob Disease To Their
Required Reportable Conditions List

NEW ORLEANS, LOUISIANA April 08, 2008 Health News

(PRLEAP.COM) Alaska, Illinois and Wisconsin have all added Creutzfeldt-Jakob
disease (CJD) to their required reportable conditions list. "This is
wonderful to hear", remarked Christy Brom, the director/founder of CJD
Aware!, a non-profit, information organization based in New Orleans,
Louisiana. "State Health Departments are on the front-lines when dealing
with public health issues, such as infectious diseases. By making CJD a
reportable condition, health officials can gather data that shows how often
the disease occurs, monitor the trends of the disease and continue their
tracking of outbreaks." added Ms. Brom. All states have reportable
conditions list, but requirements for reporting diseases
varies from state-to-state.

Since its inception in the spring of 2002, CJD Aware! continues to grow at a
steady pace. The information organization has nearly tripled its database of
individuals, medical professionals and educators who have contacted the
organization requesting information about Creutzfeldt-Jakob disease (CJD).
In addition to monitoring several state Health Departments as some revise
their rules/regulations, CJD Aware! is also continuing their annual ‘CJD
Awareness Week’ campaign.

"This campaign will go on until we have proclamations from the governors of
all 50 states," remarked Sandy Rouse, a CJD Aware! volunteer. "We have
volunteers ready to assist us this year with Virginia, Oklahoma, South
Carolina and Florida," added Ms. Rouse. CJD Aware! has seen a surge in
requests for their information packets, as well as a recent request from a
dementia clinic for all their available information.

As CJD Aware! begins a very busy and growth-oriented time, they find it
fitting that this year, 2008, is the 25th anniversary of the Orphan Drug
Act. Signed on Janury 4, 1983 by President Ronald Reagan, this legislation
brings new hope to the 25 million Americans who suffer from rare diseases.
The staff and volunteers continue with CJD Aware’s! mission of "sharing
information to find a cure" in each packet that is mailed out, each email
that is responded to and each phone call that is answered. "In our 6 years
of existence, it is extremely gratifying for CJD Aware! to feel that we have
helped families understand and deal with this very rare and devastating
disease" says Ms. Brom. Contact Information Christy Brom
CJD Aware!


Email CJD Aware!

---------- ----------


*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).


-- 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

-- 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.


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. -

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.


MARCH 26, 2003

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

disease in the United States

Email Terry S. Singeltary:

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?


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

June 2003

BY Philip Yam


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.

Copyright © 2003 Published by Elsevier Ltd.

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." ...

Diagnosis and Reporting of Creutzfeldt-Jakob Disease

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

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

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

[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


2 January 2000

British Medical Journal

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

15 November 1999

British Medical Journal

vCJD in the USA * BSE in U.S.


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