CJD International Support AlliancE
CJDISA Business Plan
Download CJDISA Business Plan here.
Articles
• SMH article on Alliance - download Word DOC here
Photos
CJD Foundation Family Conference
Washington DC 2011
CJD Foundation Conference Presentations - 2011
Washington DC 2010
Washington DC 2009
Washington DC 2008
Washington DC 2007
Inaugural Meeting Washington DC 2006
The CJDISA Friends and Advisors
Group (F/A Group)
In 2009 the 'Friends and Advisors' Group was formed.
This consists of scientists, researchers, neurologists
and others who professionally have contributed to,
and assisted the work of the CJDISA.
USA
Professor Pierluigi Gambetti -
Neuropathologist, Director National Prion Disease
Pathology Surveillance Center
Medical Director of the CJD Foundation USA
Paul Brown MD-
Neurologist, neuroscientist
Brian Appleby MD -
Psychiatrist, Co-Director Frontal Temporal and
Young Onset Dementia Clinic, Johns Hopkins
Hospital, Baltimore USA
Lawrence Schonberger MD -
Neurologist, Assistanct Director for Public Health,
Centers for Disease Control and Prevention USA
Ermias Belay MD -
Epidemiologist, Assistant Director for Public Health
Centers for Disease Control and Prevention USA
Canada
Professor Neil Cashman -
Neurologist Scientific Director PrioNet Canada
UK
Professor Robert Will -
Neurologist, Former Director and Founder,
National CJD Surveillance Unit, Edinburgh UK
Professor Richard Knight -
Director National CJD Surveillance Unit, Edinburgh
UK, Member of the CJD Support Network Committee UK
Margaret Leitch RN -
National CJD Care Co-ordinator UK
Dr Simon Mead -
Consultant Neurologist, National Prion Unit London UK
Australia
Associate Professor Steven Collins -
Neurologist, Director Australian NationalCJD Registry
Principal Research Fellow
Medical Director of the CJD Support Group Network
Professor Simon Hawke -
Neurologist, Prion Disease Group, University of Sydney
Jennifer Cooke -
Journalist and Author "Cannibals Cows and the
CJD Catastrophe'
Italy
Professor Maurizio Pocchiari -
Research Director and Head, Clinical, Diagnosis
and Therapy of Neurodegenetative Disorders Unit
Instituto Superiore di Sanita
Professor Fabrizio Tagliavini -
Director, Divisions of Neuropathology and Neurology,
Fondazione IRCCS Istituto Neurologico Carlo Besta
Professor Gianluigi Forloni -
Head, Neuroscience Department and Laboratory
of Biology of Neurodegenerative Disorders
President Italian Association of Brain Aging Research
France
Jean Brugere-Picoux MD-
Valie de Broglie MD -
Director, Alliance BioSecure, France
Jean-Phillippe Brandel MD-
Researcher and Neurologist, National Network
for Disease Surveillance of CJD and related diseases
Groupe Hospitalier Iitie-Salpetriere
Benjamin Scherr -
NeuroPrion, Paris France
Germany
Professor Inga Zerr -
Department of Neurologie, National Reference Center
for TSE Georg-August University, GTottingen, Germany
Mexico
Victor Sanchez MD PhD -
Israel
Professor Ruth Gabizon
Department of Neurology, Hadassah University
Hospital
NeuroPrion 2011- Montreal presentation click here
MEMBER ORGANISATIONS
CJD Support Group Network (Australia)
The CJD Support Group Network (CJDSGN) is contracted to and funded by the Department of Health and Ageing to support and provide information to all Australians affected by CJD and other prion diseases. This includes recipients of human pituitary hormones, people in other risk groups and families caring for a loved one with suspected CJD or coming to terms with the loss of a family member or friend. The CJDSGN also promotes awareness and knowledge through an education program and resources for health care professionals. www.cjdsupport.org.au
Director - Suzanne Solvyns
(Co-Chair of the CJDISA)
CJD Foundation (USA)
The CJD Foundation (USA) consists of members concerned about the complexity of issues surrounding the fatal brain disease, CJD. Their mission is to support family and loved ones touched by CJD. The CJDF also promotes awareness and knoweldge by providing educations tools to health care professionals and others. www.cjdfoundation.org
President - Florence Kranitz
(Co-Chair of the CJDISA)
CJD Insight (USA)
The CJD Insight provide support and counselling to families affected by all forms of genetic CJD and other prion diseases. www.cjdinsight.org
Founder and Director - Deana Simpson
CJD Support Group UK
The CJD Support Group UK provides support and information for people affected by all forms of prion disease in the UK. This includes people who are at risk, spordic and genetic patients and family members as well as those affected by variant CJD. .www.cjdsupport.net
National Coordinator - Gillian Turner
CJD Support Network Japan
The CJD Support Network in Japan supports and offers assistance to people affected by prion disease in particular those suffering from CJD caused by dura mater grafts. For more information on the Japanese CJD Support Network visit their website. www.cjd-net.jp
Chair - Muneto Ueda
A.I.En.P. - ONLUS
Established in 2008 this organisation by set up by family members to provide much needed support for families affected by sporadic, genetic or variant CJD and other prion diseases.
Associaz. Italiana Encefalopatie da Prioni www.aienp.it
President - Roberto Borgis
MCJ-HCC (France)
The MCJ-HCC (Maladie de Creutzfeldt-Jacob par Hormones de Croissance Contaminees) was formed in 1996 to support and help recipients of human pituitary hormones in France. There have been 120 victims and there are still more than 800 'survivors' living with the threat of developing CJD as a result of the French human growth hormone program. In 2011 the MCJ-HCC committed to assisting French families affected by all forms of CJD and other prion diseases www.mcj-hcc.fr
President - JB Mathieu
CJK Initiative e.V. (Germany)
The CJK Initiative e.V. was officially established in 2012 and at the Prion Conference in May 2012, held in Amsterdam, became a member of the CJD International Support Alliance. Professor Inga Zerr has been holding family meeting over the past few years to assist families with informtion and to encourage the establishment of a family organisation that can offer support and assistance to Germany families affected by CJD and other prion diseases. The new organisation was established by 10 founding members and can be contacted by visiting the website www.cjk-initiative.de
President - Jens Backer
ASSOCIATE MEMBER ORGANISATIONS
CJD Foundation (Israel)
The CJD Foundation, Israel was formed in 2009. This organisation supports families affected by familial CJD as well as actively supporting research into familial CJD being conducted in Israel. info@cjd-israel.org
Founder and President - Alice Anane
Fundación CJD México
Página de apoyo para los familiares y seres queridos de personas afectadas con el CJD (Enfermedad de Creutzfeldt-Jakob) y demás prionopatías.
En esta página encontrarás información sobre al enfermedad, formas de afrontar la enfermedad, folletos y enlaces con demás organizaciones internacionales de apoyo para el CJD.
Estamos disponibles para ofrecer información sobre la enfermedad www.fundacioncjd.com
Director - Dr Victor Sanchez
NeuroPrion Website
CJDISA Section with presentations
http://www.neuroprion.org/en/patients-CJDISA.html
PRESENTATIONS
NeuroPrion Conference Presentations
NeuroPrion 2011 - Monreal, Canada - CJDISA Presentation or to view on Youtube click here
NeuroPrion 2010 - Salzburg Austria - CJDISA Presentation
NeuroPrion 2009 - Thessaloniki - Chalkidiki, Greece - CJDISA Presentation
Neuroprion Conference 2008 - Madrid, Spain.
Neuroprion Conference 2007 - Edinburgh, Scotland
CJD Foundation USA Conference Presentations
9th CJD Foundation Family Conference - 2011 Washington DC USA
9th CJD Foundation Family Conference - CJDISA Presentation
8th CJD Family Conference 2010 - Washington DC USA
7th CJD Family Conference 2009, Washington DC USA
CJD Support Group Network (Australia) Presentation 7th CJD Family Conference 2009,Washington DC USA
6th CJD Family Conference 2008 Washington DC USA
CJD Support Group Network (Australia) Presentation 6th CJD Family Conference 2008, Washington DC USA
Press Releases
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