The CJD Foundation
Newsletter
AUGUST 2009 VOLUME 2, ISSUE 3
Board of Directors
Florence Kranitz, President
President’s Message Pierluigi Gambetti, MD,
Medical Director
CJD 2009 and the Seventh Annual CJD Foundation Family Conference
Mark Goldfarb, Chairman
The conference, held July 10-13 in Washington D.C., was attended by the Nick George, Vice Chairman
Ruthie George, Treasurer
largest number of family members and prion disease experts since its inception
Sybil Willen, Secretary
in 2002 and, once again, we welcomed family members and presenters from al-
most every continent. Our two partner organizations, The National Prion Disease Ana Betro
Tom Haught
Pathology Surveillance Center and PrioNet Canada, provided both additional Tracie Kedzierski
expertise and prestige and once again it was a great pleasure for us to work with Carole Laderman
them. The evaluation forms filled out by family members agreed that this year’s Mayra Lichter
Scott Paternoster
conference was a huge success! Below are a few comments: Rhonda Rutledge
Tom Sawyer
Coming here to this conference helped to remove the feeling of isolation from having
Jim Simon
lost my husband to such a rare disease. It also provided an opportunity to learn and Deana Simpson
obtain information for future reference. Chris Szuch
Stuart Yaffa
I really can’t put into words what the Foundation is doing for not only my family Cecile Sardo, Emeritus
and I, but for all other families affected by a prion disease. You all manage to give us some
hope when we need it the most and for that, I am so grateful.
Staff
Another great conference – more updated information. Exciting happenings on the Marisa Boarman
horizon. There is hope. Associate Director
This was a great conference. It was so heartening to hear and meet the scientists. Wanda Culp-Lias
They are so knowledgeable, committed and compassionate. I leave filled with hope. Office Manager
The conference provided a combination of family meetings, scientific pres- Nancy DiGeroloma
entations, updates from directors of Prion Disease Surveillance Centers around Administrative Assistant
the world, reports from the CJD International Alliance members and financial and
INSIDE THIS ISSUE:
fundraising updates from the CJD Foundation. We also heard reports from two of
the four new CJDF grant recipients adding to our sense of pride at being able to Congressional 2-4
support prion disease research. All of the grants were underwritten by family Requests
donations. The conference gave our families a broad overview of the ugly disease HelpLine Statistics 5
which has changed our lives and served, once again, to allow families to meet Pamphlet Update 5
each other and reinforce the fact that they are not alone. (cont’d on p. 2)
Questionnaire 6
Update
Questionnaire 6-9
Report
Japanese CJDSN 10-11
Update
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President’s Message Cont’d
We were proud to have our epidemiology consultant, Steven Korzeniewski, present the first CJDF
questionnaire report which served to underscore the value of this ongoing project. Steven’s article can be
found on page 6.
Monday, July13 was devoted to Capitol Hill visits which included, along with our family members
and scientists, many conference attendees from other countries. Their presence provided an important
global perspective about CJD and BSE issues of concern. These Capitol Hill visits provided the opportu-
nity to meet with our individual Congressional representatives and talk about how prion diseases have
personally affected families’ lives as well as to discuss our important Congressional requests (listed below)
for the 2009-2010 calendar year.
NeuroPrion, the European Network of Excellence, as in previous years, sent two representatives
from Paris to video the conference presentations. This video will be available on their website
www.neuroprion.org very soon.
Our annual conferences, especially those over the last two years which included our two new
partners, have created a unique and very important global community.
The CJD Foundation’s 2009 Congressional Requests
Overview
Creutzfeldt-Jakob Disease (CJD) is a 100% fatal, rare, degenerative brain disease with no treatment
or cure at present. CJD is reported to affect approximately one person per million per population world-
wide, however, the unreported and undiagnosed number of cases remains unclear. One form of this dis-
ease, variant CJD (vCJD), is known to be caused by ingesting beef contaminated with Bovine Spongiform
Encephalopathy (BSE), more commonly known as “Mad Cow” disease. The discovery of two new strains
of BSE in cows born in the United States raises deep concern regarding possible risks to humans.
CJD is one of several prion diseases receiving modest support through diffuse federal funding under
the Departments of Agriculture, Defense, and Health and Human Services. We need your support to
strengthen and continue the coordination of prion activities and to assure the safety of the American pub-
lic and the U.S. food supply.
Key Requests
Centers for Disease Control and Prevention: Human Prion Disease Surveillance
To keep pace with the growing demand for national surveillance of human prion diseases, es-
pecially in light of the limited animal prion surveillance by the U.S. Department of Agriculture
and the discovery of BSE positive cows endangering human health, we are asking Congress to
appropriate $5.9M in FY10 for the Centers for Disease Control and Prevention (CDC) to main-
tain human prion disease surveillance. This represents an increase of $0.5M over the Admini-
stration’s budget request of $5.4M for FY09.
Background:
The Centers for Disease Control and Prevention, Division of Viral and Rickettsial Diseases, part of
the Department of Infectious Diseases, is responsible for all surveillance activities related to prion
diseases in the United States (prion refers to the infectious protein which causes CJD). A portion of
the annual budget for CDC supported prion disease surveillance is allocated to the National Prion
Disease Pathology Surveillance Center (NPDPSC) based at Case Western Reserve University in
Cleveland, Ohio.
(cont’d on p. 3)
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The NPDPSC, under the direction of Dr. Pierluigi Gambetti, one of the world’s leading prion dis-
ease experts, performs the most technologically up to date diagnostic examinations as well as ge-
netic analysis to establish the presence and type of prion disease. Between 350 and 400 cases are
examined at the NPDPSC per year. Additionally, diagnostic tests on cerebrospinal fluid are car-
ried out on close to 3,000 cases per year. Collectively, these tests allow for the definitive identifica-
tion of the first possible U.S. case of endemic vCJD, as well as new forms of prion diseases, includ-
ing the possibility of those acquired by eating prion-contaminated elk and deer meat. All of these
tests, including brain autopsy, are free to families.
The CDC also provides funding directly to eleven States to support their prion disease surveil-
lance activities, as well as to a growing number of States for surveillance of chronic wasting dis-
ease (CWD), a prion disease in deer and elk. This state funding also greatly helps the NPDPSC
monitor for possible CWD transmission to humans.
Mandatory inspection of all USDA approved meat packing facilities.
Background:
With the 2008 discovery of illegal practices at the Westland/Hallmark meat packing plant, the
very real concern that one plant with five USDA inspectors on the premises wasn’t able to un-
cover the severe infractions exposed by the National Humane Society, leads to the logical conclu-
sion that there may be other plants not in compliance. Mandatory inspections will a help to pro-
vide a strong measure of safety assurance to the U.S. meat eating consumer.
Increased BSE testing by the USDA to include all cattle over the age of 30 months and all cattle
imported from Canada.
Background:
It is a scientific fact that cattle over the age of 30 months have a higher risk of developing BSE, we
therefore ask that BSE testing be increased to include all cattle over the age of 30 months. The
dangers to the American public from ingesting “Mad Cow” infected beef, a known vector of vari-
ant Creutzfeldt-Jakob Disease (vCJD), has been elevated with the resumption of importation of
Canadian cattle over the age of 30 months (there have been 17 cases of BSE in Canadian cattle,
with one additional Canadian case discovered in Washington state in 2003, making a total of 18
Canadian BSE cases identified thus far). Cattle harboring BSE can be asymptomatic but can still
transmit vCJD to humans, a 100% fatal disease.
Currently, the USDA tests 40,000 U.S. cattle for BSE per year. This number represents less than 1% of
the 35 million head of cattle slaughtered each year for American consumption.
We ask that Congress conduct oversight into the recurring implementation delays by the FDA
of the Ruminant Feed Ban.
This regulation banning all brains, spinal cords and other specified risk materials (SRMs) from
animal feed (Title 21, Part 589.2000 of the Code of Federal Regulations known as the
“Ruminant Feed Ban”) will provide some measure of human and animal safety, but only for
the future - the longer the delay, the higher the risk.
Background:
Although cows are vegetarians by nature, the cattle industry has developed the cost saving-
method of using ground up dead livestock in feed. This feed may contain BSE infected central
nervous system tissue known as “specified risk material” (SRM), which is a source of BSE trans-
mission. Cattle can be asymptomatic but still infectious to humans and other animals. The Rumi-
nant Feed Ban, which has been delayed many times by the FDA, prohibits using SRMs in animal feed
(cont’d on p. 4)
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and will offer a safety measure but only for future and only if it is implemented.
With limited USDA BSE surveillance and no incentives for farmers to turn in sick or dead live-
stock for testing, there has been a very real risk that BSE positive cows will be missed and/or
ground up and utilized as a cost effective, but deadly, measure to feed animals on farms. This
new legislation has been delayed many times, most recently from April to October 2009. Only if
this ban is strictly enforced and not delayed further, will it offer any hope for both human and
animal safety.
Based on previous history, to pass FDA regulations and not have inspection measures in place is
an exercise in futility. “Existing food safety laws are vastly outdated” and “current laws focus
mainly on reacting to safety hazards rather than preventing them” commented Michael Taylor,
research professor of health policy at George Washington University and former administrator of
the USDA’s Food Safety Inspection Service (FSIS) in an April 30, 2008 Center for Infectious Dis-
ease Research and Policy (CIDRAP) newsletter.
We urge support for passage of H.R. 2749, Food Safety Enhancement Act of 2009.
Background:
Under this legislation, the FDA will have clear authority to issue and require manufacturers to
meet strong, enforceable performance standards to ensure the safety of various types of food.
The passage of H.R. 2749 will require the FDA to establish a national food tracing system so that
public health officials can easily determine the causes of food-borne illness outbreaks.
Representative Henry Waxman, Chairman of the Committee on Energy and Commerce, stated
that under this new legislation the “FDA will be given new tools - recalls, records access, and pen-
alties to punish bad actors - to act quickly when presented with a food safety emergency, and the
FDA will get a new dedicated source of funding - from a $500 annual registration fee on food fa-
cilities - to help conduct its vital work of keeping America safe. But FDA will not be the only cop
on the beat. One of the most important changes that will occur under this bill is a new focus on
prevention, and a shared responsibility between FDA and food manufacturers to keep the food
supply safe.”
To support a mandatory U.S. Animal Identification System through the passage of S.425 Food
Safety and Tracking Improvement Act.
Background:
S.425 was introduced in the Senate on Feb 12, 2009. This bill will “amend the Federal Food, Drug
and Cosmetic Act, provide for the establishment of a traceability system for food, to amend the
Federal Meat Inspection Act and the Poultry Products Inspection Act, the Egg Inspection Act and
the Federal Food, Drug and Cosmetic Act to provide for improved public health and food safety
through enhanced enforcement and other purposes.”
Contaminated animal feed is the acknowledged source of most BSE transmissions. It is highly
unlikely that only one animal per herd would ingest BSE contaminated feed. Because there is no
mandatory tracking system in place, the USDA was not able to locate the birth herds for two BSE
positive cows despite the rigorous efforts of the Animal Plant Health Inspection Services (APHIS).
This missing link creates a dangerous risk to consumers. A mandatory animal tracking system,
such as those in Japan, the United Kingdom and other European Union countries will ensure lim-
ited exposure to BSE, help to reassure our trading partners and serve to eliminate the possible ero-
sion of consumer confidence.
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HelpLine Statistics
The CJD Foundation’s largest ongoing project is our toll-free HelpLine (1-800-659-1991). The
HelpLine is available to families coping with a loved one’s suspected CJD diagnosis who are in need of
support and information, to medical professionals, funeral directors and embalmers, the general public,
and the press and the media. Below you will find HelpLine statistics for January 1, 2009 – July 31, 2009.
The CJD Foundation is not a reporting agency and families are not required to report their loved one’s illness or death
to us. These statistics are not intended to be scientific in nature, but instead to help validate the work we do on a daily
basis.
NEW HELPLINE HELPLINE GENERAL MEDICAL UNIQUE
U.S. DEATHS
2009 CASES
REPORTED
REPORTED
(FAMILY)
CALLS
(FAMILY)
EMAILS
INQUIRY
CONTACTS
PROF
CONTACTS
WEBSITE
VISITORS
January 26 27 84 76 8 12 4,788
February 15 16 67 70 3 12 4,993
March 29 22 108 82 12 9 5,462
April 23 18 67 88 8 8 4,994
May 29 21 80 50 4 7 5,554
June 12 12 64 60 - 5 4,717
July 27 18 62 33 2 7 4,086
TOTALS = 161 134 532 459 37 60 34,594
Note 1: Not all new cases and deaths reported are confirmed by autopsy.
Note 2: “Contacts” include emails and phone calls.
The CJD Foundation’s Updated Pamphlet
We are pleased to announce that we have completed the 4th edition of our pamphlet which
includes updated information by many prion disease experts. The CJD Foundation’s pamphlet was created
in 2003 to present a comprehensive overview of CJD and other prion diseases. It is mailed, free of charge, to
anyone requesting one and is also sent out in our mailings. This updated pamphlet can be viewed at
http://www.cjdfoundation.org/pdfs/aboutcjd.pdf
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5
CJDF Questionnaire Update
Thanks to our families, the CJD Foundation’s questionnaire efforts continue to be very successful.
The questionnaire was revised in September 2008 at which time we started mailing them with our condo-
lence packets. Since the revision and mailing began, we have received 390 completed questionnaires! All
of the information provided, including that dating back to 2000, have been entered into our database and
are being analyzed on an ongoing basis by our epidemiologist consultant, Steven Korzeniewski. Steven
began compiling his report using those questionnaires received from September 2008 through March 2009
and, as previously stated, presented the results at our annual conference. He will now begin work on the
earlier data and will issue an updated report in the months to come. With Steven’s expertise, we are plan-
ning to submit this body of work for publication in the next few months. Steven’s article, below, is a con-
cise overview of his conference report. The full report will be available on our website soon.
We are asking family members who returned their questionnaire prior to receiving final autopsy
results to please contact us so we can complete your information. If possible, we would like you to
attach a copy of the autopsy report to your questionnaire. If you are unable to send a hard copy, please
call or email us with the information – it is important to include these findings in our data analysis. Re-
ports can be faxed to 330.668.2474, emailed to help@cjdfoundation.org, or mailed to The CJD Foundation,
P.O. Box 5312, Akron, OH 44334. Please feel free to email or call us with any questions or if you need help
obtaining the results. As always, this information is confidential and randomized in all reports, no names
are ever used.
We look for possible trends or similarities in patient backgrounds and for any other information
which might prove helpful to our researchers. The Questionnaire not only provides a unique overview but
it also offers each family, who is willing to share their story, a safe and meaningful way to do so. At the
present time, we are the only repository of anecdotal CJD patient information in the United States. If
you have not yet completed a questionnaire and are willing to do so, please contact us at 1-800-659-1991 or
help@cjdfoundation.org.
We are very happy to announce that the Homer Family Foundation has renewed the grant allowing
us to continue this project; we are grateful to the Homer Family for continuing to believe in our work.
The CJD Foundation’s Questionnaire Report
By: Steven Korzeniewski, Ph-D Candidate, MSc, MA
This article is the inaugural report of the Creutzfeldt-Jakob Disease Foundation (CJDF) question-
naire results. The CJDF, a nonprofit 501(c)(3), is an organization of people concerned about the complexity
of issues surrounding this rare, degenerative and invariably fatal brain disorder aimed towards support-
ing families and loved ones touched by CJD.
Since shortly after its inception, the CJDF has been in touch with researchers who are searching for
new information about the disease. The Foundation began collaborating with the National Prion Disease
Pathology Surveillance Center in 1999 and conducted the first scientific conference on CJD in Miami in
2001.
Until 2008, the questionnaires were conducted over the telephone, then beginning in September
2008, the CJDF began sending out their updated questionnaire with all condolence packets. Also in 2008,
the CJDF hired an epidemiologist consultant, Steven Korzeniewski, to evaluate and revise Foundation
data collection efforts in an attempt to learn more about the disease in the United States.
(cont’d on p. 7)
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6
CJDF QUESTIONNAIRE • Evaluation of control and prevention measures
• Monitoring of changes in infectious agents
After losing her father, Rigas
• Monitoring of isolation activities
Rigopoulis, to CJD, Tracie Kedzier-
ski developed and carried out the • Detection of changes in health practice
questionnaire project in his honor
• Planning
until 2003. Without Tracie's hard
work, time and personal efforts this project would not Reports of suspected cases are registered by
have been possible. the CJDF when contact is made by a patient, a pa-
tient’s family or representative, or a health care pro-
In 2001, the CJDF began conducting question-
vider. The CJDF sends out a questionnaire at the
naires through representatives of patients suspected or
appropriate time and asks for an informed consent
confirmed with CJD. The Foundation’s efforts are in
form to be signed.
essence a passive surveillance system. Specifically,
’surveillance’ is defined as the “..ongoing, systematic After several different versions, the CJDF
collection, analysis, interpretation, and dissemination questionnaire is now divided into the following sec-
of data regarding a health-related event for use in pub- tions:
lic health action to reduce morbidity and/or mortality • Respondent Information • Autopsy
and to improve health.” (Thacker & Berckelmen; 1988)
The system is ‘passive’ in that it relies on health care • General Patient • Family History
Information
providers, patients and families to report cases of the • Occupation
disease rather than actively seeking out the informa- • Diagnosis
tion. • Food/Animal
• Diagnosing Physician Exposures
The advantages of a passive system are that it is
not burdensome to the healthcare system and is less Initially, surveys were stored in hard copy
costly; however, the characteristic limitation of passive only. In 2003 an electronic Microsoft Access data-
surveillance systems is incompleteness, or an inability base was constructed to store the information in a
to detect all cases within a defined population. The format able to be readily analyzed and used for both
CJDF augments the completeness by publicizing the program evaluation and scientific investigations. In
importance of reporting through continued education 2008, with funding from the Homer Family Founda-
of health care providers, educators and families. Many tion, the CJDF enlisted the services of an epidemi-
surveillance systems including those for birth defects, ologist consultant, Steven Korzeniewski, to evaluate
stroke, and other conditions are passive mostly due to and revise data collection methods. The intention
the financial resources necessary for active surveil- was to render the data more useable for data analy-
lance. sis.
Steven Teutsch and Elliot Churchill list the fol- While data collected were deemed usable, lack
lowing uses of surveillance in their book titled Princi- of categorical response options, duplicative and/or
ples and Practice of Public Health Surveillance: missing information, and mixed response types (i.e.,
• Quantitative estimates of the magnitude of a health categorical and text responses) inhibited analysis.
problem The data were re-coded, where possible, to facilitate
analysis and the questionnaire and associated elec-
• Portrayal of the natural history of disease
tronic database were revised.
• Detection of epidemics This report details descriptive data collected
• Documentation of the distribution and spread of a by the CJDF questionnaire since being revised,
health event September 2008.
• Facilitating epidemiologic and laboratory research (cont’d on p. 8)
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DEMOGRAPHICS The majority of patients (85%) experi-
enced illness for one year or less; 35% experi-
Since updating the questionnaire and electronic da- enced symptoms for less than three months
tabase (Version 2008), 328 respondents have provided in- while only 3% experienced symptoms beyond
formation about their loved one(Sept 2008 - March 2009). two years.
The distribution of relationships between patients Duration of Illness, CJD Cases, CJDF
and respondents are reported below. Survey, Version 2008
While the majority of respondents (60%) were 10% 3%
spouses of the patient, approximately 35% of respondents 35%
were the patients’ children .
52%
Relationship of Respondent to CJD
Less than 3 months 3-12 months
Cases, CJDF Survey, Version 2008 12-24 months More than 24 months
28.7%
40.9% Nearly all (96%) of the patients reported
were Caucasian; seven Hispanic/Latino cases,
and single cases of African American, Asian,
5.8% and Native American race were reported .
5.8% 18.9%
Daughter Other Husband Son Wife Reported Race of Cases, CJDF
Survey, Version 2008
2%
The distribution of year of death of the patient is pre- 2%
Caucasian
sented in Table 1. Nearly 25% of the patients died in 2008,
another 29% expired in either 2006 or 2007, while others Hispanic/Latino
(45%) died in 2005 or prior. The mean and median age of Other
96%
reported cases was 66 years.
The proportion of males (53%) was
Table 1: Year of Death of Cases Reported to CJDF since slightly more than half meaning these data
September, 2008 suggest CJD does not vary appreciably by
sex. The majority (84%) of patients were mar-
Year N % ried, nine percent were widowed and six
<2000 27 8.52 percent were divorced. Less than five percent
2001 17 5.36 of patients had no children; most cases (63%)
2002 19 5.99 had one to two children.
2003 22 6.94
More than half of the patients attended
2004 25 7.89
college (53%); only 7% did not graduate high
2005 32 10.09
school or obtain a GED. This may be reflec-
2006 41 12.93
tive of a greater likelihood of detection
2007 50 15.77
among persons with private insurance (more
2008 78 24.61
likely among those with greater education).
2009 6 1.89
More than half (58%) of the cases were cov-
*11 respondents did not report year of death ered by private insurance; 35% were covered
by Medicare.
(cont’d on p. 9)
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While 58% of the patients reported were con- The information collected may also be sub-
firmed by autopsy, 34% were not confirmed due to ject to recall bias. Specifically, a representative is
lack of autopsy, 5% had results pending at the time of surveyed about the experiences of the cases
analysis, and only 3 cases (1%) were negative for CJD. meaning information provided could be incor-
Of the patients having confirmed CJD (n=190), 67% rect considering respondents may not be aware
were of the sporadic subtype. of all aspects of the patients’ lives. The CJDF is
considering surveying the respondents to attenu-
ate the potential impact of this bias.
CJD Confirmation Status, CJDF Survey
Version 2008 Patients may go undetected and thus
Inconclusive would not be reported to the Foundation. Rea-
0.3%
Results
Not Confirmed
sons for patients to potentially go undetected
0.9%
include lack of adequate healthcare which may
33.8% Lacking Autopsy preclude the opportunity for diagnosis, lack of
Results Pending
provider awareness about proper steps toward
57.9% CJD confirmation and recommended reporting,
4.6%
Unknow n or misdiagnosis.
2.4%
Confirmed However, all databases have their limita-
tions and information collected by the Founda-
tion is no exception. Limitations do not negate
the utility of data. Evaluation of the CJDF data is
ongoing and continuous quality improvement
CJD Type, Confirmed Cases (n=190), CJDF measures are being implemented to improve
Survey, Version 2008 data quality and use.
7% 5%
21%
FUTURE DIRECTIONS
67%
The CJDF plans to publish quarterly news-
Familial Pending Unknow n Sporadic letters focusing on analyses of questionnaire data
relevant to specific topics of interest. Future top-
ics include autopsy and CJD, family history,
symptoms, exposures, and trends over time in
LIMITATIONS disease rates and morbidities. Public use data
will also be made available upon request; data
While the CJDF questionnaire fills a niche by request procedures are being developed and will
collecting patient level data on exposures and symp- be available online. These efforts are intended to
toms not systematically collected from both sus- increase awareness and understanding about the
pected and confirmed patients elsewhere in the CJD experience in the United States.
United States, there are several limitations.
Information collected by the CJDF may not be
representative of the general population of CJD pa-
tients. However, as educational efforts to improve
reporting increase, so have the numbers of reported
patients, meaning the sensitivity of the system to
detect patients is improving.
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9
The Japanese CJD Support Network’s 2009 Activities Report
By: Minae Asakawa as translated by Hiromi Nakaoji
Overview: Victims by dura mater implants are counted for 135 cases, 116 cases (111 cases settled) are in
court. For the past year, new victims were identified. The longest time for incubation is 29 years.
1. Life support consultation: Four consultation sites (Gifu, Sapporo, Tokyo, and Shiga) were set up and
consultants were placed to deal with issues raised by CJD patient family members and family members of
the deceased via telephone, email, bulletin board on web home page and interviews. If necessary, consult-
ants visited family members at home and hospitals. The number of consultation was 268 (telephone 163,
interviews 14, email 91), which was about the same number as with last year; however, the number in bul-
letin board on line was 259, which was three times as much as the last year.
2. Training: All the consultants gathered to report and discuss cases in four times a year, one on May 24,
2008 in Nagoya, on Sept. 14 in Sapporo, Nov. 12 in Tokyo, and March 20, 2009 in Kyoto. Additionally, two
consultants attended peer support training session to improve their capabilities and skills.
3. Local consultations: (1) Four sessions were held such as June 3, 2008 in Tokyo including a general as-
sembly and negotiations with Ministry of Health, Welfare and Labor, Nov. 12 in Tokyo including CJD day
and negotiations with Ministry of Health, Welfare and Labor, March 20, 2009 in Kyoto including a lecture
by Mr. Satoshi Imoto of Mainichi Daily News Desk.
(2) Three small-scale consultations limited to areas were held in Obihiro on June 28-29, 2008, in Fukushima
on Oct 11-12, Hyogo on March 7-8 for victims’ family and family of deceased can talk to each other and
share their emotions and experience.
4. Support to family members of the living and deceased victims: (1) Flowers were sent to express con-
dolence on the day of victims’ death or birthday of the family members of the victims and the deceased.
(2) Transportation cost was provided to family members of the victims of the living and deceased for them
to come to local consultation day without financial burden.
5. Advocacy and public affairs: (1) In cooperation with researchers, a lecture for general public was held
in Sapporo on Sept. 14 to educate general citizens and those working for medical institutions.
(2) CJD Net News for members were issued three times a year (March 11, Nov. 7, and March 16) to pro-
vide information to family members of the living and deceased victims, supporting members, physicians
for CJD, and related government and medical organizations throughout Japan (over 1,300 issues), and
along with newsletters brochures were sent out to over 500 public health centers.
(3) Information was also proved on Web site with frequent updates.
6. International exchange: Three representatives were sent to International meeting on July 10-14, 2008 to
make presentations about the status in Japan and met with other international CJD network members. Ms.
Nakaoji, interpreter to Japanese Network, participated in CJD International Support Alliance telephone
conference on several occasions to report about Japan, through which Japanese network provided and
exchanged information on CJD and medical research.
7. Cooperation with other organizations: Our network sent our members to various events and meetings
related to CJD and other medicine-inflicted diseases for cooperation and alliance to promote shared issues
and purposes. In addition, to obtain more information on CJD, our network actively participated in re-
search report meetings held by Ministry of Health, Welfare, and Labor and other organizations.
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Planned activities in 2009
*Activities which are the same as the previous year are not mentioned below.
1. Life support consultations: To make smooth consultation, consultation manual will be developed,
which will be distributed to medical and government organizations related to CJD and which will be used
by consultants.
2. Training: Four case study sessions will be held by consultants.
3. Local consultations: Four consultations such as Tokyo on June 2, 2009, Nagoya on Oct. 31, Tokyo on
Nov. 12 for International Jacob’s Day, Kyoto on March 13, 2010 will be held. Other small-scale consulta-
tions will be held in seven sites.
4. Family support to the victims of the living and diseased: Efforts will be made to issue “Kawara-
ban” (newsletter for families of the victims) to promote exchanges among families of victims of the living
and deceased to share the messages sent to the Network and the status reports on consultations. Another
effort will be made to make a list of families if they wish to be listed.
5. Advocacy and public affairs: New brochure will be made.
6. International exchange: International exchange will be promoted as much as possible through CJD In-
ternational Support Alliance to obtain international information and opinion exchange regarding medical
updates on CJD, how supports should be provided etc. (Ms. Yumiko Yamamoto was planned to be sent to
July conference, but she could not attend the conference since she was not allowed by her employer hospi-
tal to make international travel due to the swine flu.)
7. Cooperation with other organizations
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