Skip to main content
0
Category

Events

Jun 09

CJDSGN Meeting – Perth

By Events, Meetings, News

You are invited to attend a CJD Support Group Network (CJDSGN) meeting.

  • Date: Postponed from June to Saturday 14th August 2021
  • Time:  1pm to 4.30pm – afternoon tea will be provided
  • Venue: Mantra on Hay
  • Address: 201 Hay Street, East Perth WA
  • Telephone No: 08 9267 4888
  • RSVP: Wednesday 11th August 2021. Final numbers will be required for catering purposes by this date.
  • email: contactus@cjdsupport.org.au or call the toll free number 1800 052466
  • Hosted by:  Suzanne Solvyns and David Ralston representing the Committee of the CJD Support Group Network.
  • Guest Speaker: Dr Christiane Stehmann, Australian National CJD Registry (ANCJDR) – borders permitting.  An update on surveillance, research and improvements to diagnostic tests in particular RT-QuIC.
  • Video updates on current studies and possible treatment options. (A program will be provided once we have confirmation of attendees)

The afternoon session will consist of round tables where you will have the opportunity to ask any questions, share your stories with other family members who understand the difficult journey called CJD and link in with other local family members for mutual support.

For those of you who have attended meetings and conferences in the past we hope that you will also come along to help us to support the new families who unfortunately continue to have their lives touched by this monster of a disease.

The 1800 052466 will be diverted to my mobile in case you need to make contact on the day of the meeting. 

Feb 03

CJDSGN Family Meeting- Melbourne

By Events, Meetings

You are invited to attend a CJD Support Group Network (CJDSGN) family meeting.

    • Date: Saturday 29rd February, 2020
    • Time:  2pm to 5.30pm – afternoon tea will be provided
    • Venue: Jasper Hotel                                                       
    • Address: 489 Elizabeth Street, Melbourne VIC 3000
    • Telephone No: (03) 83272727
    • RSVP: Thursday 27th February, 2020 
    • email: s.solvyns@cjdsupport.org.au or call the toll free number 1800 052466.                                                                                                                 Final numbers will be required for catering purposes by this date.

Hosted by:  Suzanne Solvyns and David Ralston and CJD family representatives on the Committee of the CJD Support Group Network.
Special Guest: Dr Christiane Stehmann, Australian National CJD Registry.

This meeting is an informal meeting where you will have the opportunity to ask any questions, share your stories with other family members who understand the difficult journey called CJD and link in with other family members for mutual support.

For those of you who have attended meetings and conferences in the past we hope that you will also come along to help us to support the new families who unfortunately continue to have their lives touched by this monster of a disease.

For those who could not join us for the 12th Annual National CJD Conference this is a good opportunity to get an update on prion disease research in Australia and around the world.

The 1800 052466 will be diverted to my mobile in case you need to make contact on the day of the meeting. 

Jan 08

CJDSGN Meeting- Brisbane

By Events, Meetings, News

You are invited to attend a CJD Support Group Network (CJDSGN) meeting.

  • Date: Saturday 1st February, 2020
  • Time:  2pm to 5.30pm – afternoon tea will be provided
  • Venue: Soda Apartments
  • Address: 27 Cordelia Street, South Brisbane
  • Telephone No: 07 3844 9988
  • RSVP: Thursday 30th January, 2020. Final numbers will be required for catering purposes by this date.
  • email: s.solvyns@cjdsupport.org.au or call the toll free number 1800 052466
  • Hosted by:  Suzanne Solvyns and David Ralston – and members of the Committee of the CJD Support Group Network. 

This meeting is an informal meeting where you will have the opportunity to ask any questions, share your stories and link in with others for mutual support.

We will also be providing an update on project designed to assist ‘at risk of CJD’ individuals and CJD patients and their families.

This is also a great opportunity to get some feedback from the 12th annual national CJD conference if you were unable to attend.

The 1800 052466 will be diverted to my mobile in case you need to make contact on the day of the meeting. 

Nov 13

CJDSGN Meeting- QLD

By Events

You are invited to attend a CJD Support Group Network (CJDSGN) meeting.

Hosted by:  Suzanne Solvyns and David Ralston – representing the Committee of the CJD Support Group Network.

This meeting is an informal meeting where you will have the opportunity to ask any questions, share your stories with other family members who understand the difficult journey called CJD and link in with other family members for mutual support.

For those of you who have attended meetings and conferences in the past we hope that you will also come along to help us to support the new families who unfortunately continue to have their lives touched by this monster of a disease.

This is also a great opportunity to get some feedback from the 11th annual national CJD conference if you were unable to attend.

Date: Saturday 15thDecember 2018

Time:  2pm to 5.30pm – afternoon tea will be provided

Venue: Central Dockside Apartment Hotel

Address: 44 Ferry Street, Kangaroo Point QLD

Telephone No: 07 3891 6644

RSVP:   Thursday 13th December 2018

Final numbers will be required for catering purposes by this date.

Email: s.solvyns@cjdsupport.org.auor call the toll free number 1800 052466

The 1800 052466 will be diverted to my mobile in case you need to make contact on the day of the meeting. 

Sep 19

Registration Now Open- 11th Annual National CJD Conference

By Events, News, Presentations

CJD Support Group Network’s 11th Annual National CJD Conference

Registration is now open for the 11th Annual National CJD Conference. 

Join us to honour 25 years of support and surveillance in Australia.

– BOOK TICKETS ONLINE: CJDSGN SHOP

– TO BOOK TICKETS VIA EMAIL/MAIL/PHONE : CJD_Conference 2018_Registration Form 

 

Please join us for a day of bonding, awareness and knowledge!

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

  • CJD family members
  • People at increased risk of developing CJD
  • Health care professionals involved in patient care or infection prevention and control.

For CJD family members this is an opportunity to meet with other family members, share your stories, get answers to those outstanding questions from world experts, nd out what research is happening and how you can help 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.

For health care professionals this is an opportunity to learn more about CJD and prion disease 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.

Friday 23rd November, 2018 – Meeting for Genetic CJD family members.
Saturday 24th November, 2018 – All day meeting for CJD families, people at increased risk of developing CJD and Health Care Professionals involved in patient care or infection prevention and control.

Key Note Speaker – Professor Richard Knight, Professor of Clinical Neurology, University of Edinburgh and UK National CJD Surveillance Unit.

  • Free for those at risk and CJD family members.
  • Registration for Health Care Professionals – $60 for the full day.
  • Location- Jasper Hotel, Melbourne
Sep 18

CJDSGN Family Meeting- Sydney

By Events

You are invited to attend a CJD Support Group Network (CJDSGN) family meeting.

Hosted by:  Suzanne Solvyns and David Ralston – representing the Committee of the CJD Support Group Network. 

This meeting is an informal meeting where you will have the opportunity to ask any questions, share your stories with other family members who understand the difficult journey called CJD and link in with other family members for mutual support.

For those of you who have attended meetings and conferences in the past we hope that you will also come along to help us to support the new families who unfortunately continue to have their lives touched by this monster of a disease.

This is also a good way to meet others in advance if you plan to attend the Annual National CJD Conference on 24thNovember 2018.

Date:  Saturday 22rd September 2018

Time:  2pm to 5.30pm – afternoon tea will be provided

Venue: Kirribilli Club

Address: 11 Harbourside Crescent, Lavender Bay NSW 2060 (Parking is available under the club)

Telephone No: 02 99552245 

RSVP:   Thursday 20th September 2018

Final numbers will be required for catering purposes by this date.

Email: s.solvyns@cjdsupport.org.au or call the toll free number 1800 052466

The 1800 052466 will be diverted to my mobile in case you need to make contact on the day of the meeting. 

Sep 18

CJDSGN Meeting- Sydney

By Events

You are invited to attend a CJD Support Group Network (CJDSGN) family meeting.

Hosted by:  Suzanne Solvyns and David Ralston – representing the Committee of the CJD Support Group Network.

This meeting is an informal meeting as a general update and this will also provide the opportunity to discuss any infection control issues and ask questions. We will also provide an update on changes to support we are offering in regard to access to health care without delays when high infectivity tissue is involved.

Date:  Saturday 22rd September 2018

Time:  2pm to 5.30pm – afternoon tea will be provided

Venue: Kirribilli Club

Address: 11 Harbourside Crescent, Lavender Bay NSW 2060 (Parking is available under the club)

Telephone No: 02 99552245

RSVP:   Thursday 20th September 2018

Final numbers will be required for catering purposes by this date.

Email: s.solvyns@cjdsupport.org.auor call the toll free number 1800 052466

The 1800 052466 will be diverted to my mobile in case you need to make contact on the day of the meeting. 

Sep 03

Cocktails, Canapés and Comedy for CJD Research

By Events, Fundraising, News

In Memory of Jenny Duckworth

After raising $18k last year for CJD research, this year the Duckworth family are aiming to raise $50k to fund local researchers in Australia.

CJD is a rare, degenerative and fatal brain disease, that affects 2 in a million people every year.

Due to the rarity and aggressive nature of this disease, funding for research is sadly limited to donations.

Since losing mum Jenny Duckworth to CJD in 2016, her children have inspired a vision that no other family will have to go through what they did.

Please join them on Saturday 17th November as they host a night of cocktails, canapés and comedy, to raise much needed funds for CJD research.

To find out more about the event and purchase tickets, click here.

To donate in memory of Jenny Duckworth, click click here.

 

Close Menu