A conference on Creutzfeldt-Jakob disease (CJD) and other prion diseases.

For CJD family members this is an opportunity to meet with other family members, share your stories, get answers to those outstanding questions from prion disease experts and hear about advancements that may lead to clinical trials in the future.   Join us as part of our CJD family community and hear how you can assist by raising funds, promoting awareness and educating your local health care professionals.

For those at increased risk of developing CJD an update on iatrogenic (medically acquired CJD) and expert advice on how the CJD infection control guidelines affect you and what initiatives are being developed to provide more education and knowledge of the National Infection Control Guidelines and less discrimination in the health care setting.

For health care professionals involved with surgical procedures, infection control or care if a patient with suspected CJD this is an opportunity to learn more about CJD and other prion diseases or help by sharing your knowledge and experience. We need champions who help promote awareness and knowledge and those of you who attend our conference are our champions.

For members of the prion disease research and surveillance community in Australia we welcome you to join us and share information about your work and knowledge with those who are personally affected.

Program

Key speakers from Australia and overseas will provide information on the following topics:

  • An overview of prion disease.
  • Clinical advancements towards treatments, diagnostic improvements and risk factors for CJD.
  • Surveillance in Australia, challenges and advancements with diagnostic tools.
  • Update of possible clinical trials in the future.
  • An update on Guidelines to assist with testing for genetic forms of prion disease.
  • Initiatives to improve management of CJD risk in the health setting.

Our research teams will provide updates on current research work in Australia and acknowledge the tremendous support provided by families via the CJDSGN.

Personal stories from family members who know the difficult journey called CJD and stories from those at risk who often face discrimination and delays accessing health care.

The round table session during the afternoon will provide time for one on one discussions with our presenters.
Friday 25th October

This meeting is for free for genetic family members or those wanting to understand more about PRNP (DNA) testing to rule out or establish a genetic cause for a loved one suffering with suspected CJD.

This is an informal meeting attending by a genetic counsellor and other prion disease experts to answer questions.

This meeting provides a safe environment to ask questions and to meet and offer support other family members.

Registration if required for catering purposes.

Venue

Jasper Hotel – Function Hall,
489 Elizabeth Street, Melbourne Vic 3000 03 8327 2777

  • Accommodation for the conference at Jasper Hotel – Deluxe Queen (room only) $154 per room per night.
  • You can book this special conference rate online by including the code CJD2019 or by calling the hotel on 03 83272777 and mentioning the code.
  • Room availability is limited so please book early.

Speakers

Meet our most valued experts.

More to be announced soon.

Brian Appleby, MD

Director, National Prion Disease Pathology Surveillance Center USA

Dr. Appleby is a neuropsychiatrist with clinical and research interests in prion diseases (e.g., Creutzfeldt-Jakob disease) and young-onset dementias.

    Professor Steven Collins

    Director of the Australian National Creutzfeldt-Jakob Disease Registry

    Steven Collins is a neurologist who is Director of the Australian National Creutzfeldt-Jakob Disease Registry (ANCJDR).

      Associate Professor Victoria Lawson

      Associate Professor, Department of Microbiology and Immunology, School of Biomedical Sciences, The University of Melbourne

      Victoria (Vicki) Lawson is an Associate Professor in the Department of Microbiology and Immunology, in the School of Biomedical Sciences at The University of Melbourne.

        Professor Andy Hill

        Institute Director, La Trobe Institute of Molecular Sciences, La Trobe University

        In 2016 Andy was elected President of the International Society of Extracellular Vesicles (ISEV) which is a research area his group has used in the study of prion disease.

          Donna Cameron

          Infection Control Consultant, Victorian Department of Health and Human Services

          Donna is an Infection Control Consultant with the Microbiological Diagnostic Unit Public Health Laboratory and Communicable Diseases Prevention and Control Unit at the Victorian Department of Health and Human Services.

            Program

            8:30am
            Welcome refreshments, Conference registration (Function Hall)
            Suzanne Solvyns, Director, CJD Support Group Network Co-chair of the CJD International Support Alliance
            Chair – Associate Professor Victoria Lawson

            Q & A: – 9.30am – 9.35am

            Associate Professor Brian Appleby- Director, National Prion Pathology Surveillance Center (NPPSC) USA

            PANEL:
            Professor Steven Collins, Director, ANCJDR
            Dr Christiane Stehmann, Co-ordinator, ANCJDR
            Dr Matteo Senesi, Research Fellow, ANCJDR
            Dr Vicki Lewis, Research Fellow, ANCJDR
            Shannon Sarros, ANCJDR
            Professor Catriona McLean (neuropathologist),

            10.30am – 10.50am
            Morning Tea Poster Display

            Q & A: 11.20am – 11.25am

            Associate Professor Brian Appleby

            Presentation

            Eric Minikel and Sonia Vallabh- Broad Institute, Boston, USA

            Q & A: 12.40 – 12.45pm

            Patrick Cauntay, Assistance Director, Patient Advocacy Ionis USA
            12.45pm – 12.55pm
            Video update from London Prion Unit on PRN 100 (human antibody manufactured from the mouse antibody)
            12.55pm – 1.00pm
            General Discussion
            1.00pm - 2.00pm
            Lunch & Poster Display

            To acknowledge and thank special people who have become champions for all affected by prion diseases.

            Personal Stories

            Suzanne Solvyns

            CJD Risk Management working group

            Role of health departments

            Revision of infection control guidelines – Practical handbook

            Report on funding projects and prion disease research in Australia.

            Chair – Professor Andrew Hill
            4.00pm – 4.20pm
            Afternoon Tea Poster Display
            4.20pm - 4.50pm
            Round tables

            Dinner includes a 3 course meal and soft drinks (alcoholic drinks available for purchase) $50 per head.

            2:30 PM
            Genetic Family Meeting

            This meeting is for free for genetic family members or those wanting to understand more about PRNP (DNA) testing to rule out or establish a genetic cause for a loved one suffering with suspected CJD.

            This is an informal meeting attending by a genetic counsellor and other prion disease experts to answer questions.

            This meeting provides a safe environment to ask questions and to meet and offer support other family members.

            Registration is required for catering purposes.

            Event tickets

             

            Genetic Family Meeting
            $Free
            • Registration only for family members affected by genetic CJD or other prion diseases and family members seeking advice on genetic testing.
            Register now
            All Day Conference
            $0-60
            • Full day conference including morning and afternoon tea and lunch
            • Free for individual and family members personally affected by CJD or other prion diseases.
            • Free for members of the Prion Research community.
            • $60 for Health Care Professionals (HCP) – (to cover the cost of catering)
            Register Now
            Conference Dinner
            $50
            • 3 course meal
            • Soft drinks included
            • Alcoholic drinks available to purchase
            Buy now