Dr Cathryn Haigh

By News

So proud of Dr Cathryn Haigh, affectionately known as ‘Our Cath’ as she worked with our researchers in Australia for many years before becoming a senior researcher at the Rocky Mountain Laboratories in Hamilton, USA.

Cath contributes the start of this work to a donation made via the CJDSGN as seed money by Mr Graham Murray of AACS Pty Ltd in memory of his daughter Silva Coelho who died of CJD at age 39 in 2009.

Graham has also funded a number of grants and memorial awards as well as travel award that assist students and young researchers to attend International Prion conference.

The CJDSGN is very proud and grateful of the support that families provide from their fundraising efforts and memorial donations enabling the CJDSGN to assist our researchers so far by providing 1.2 million in funding support.

We certainly are a CJD family community working together towards a treatment or cure.

CJDSGN Family Meeting- Perth

By Meetings

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

Date: Saturday 23rd February, 2019

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

VenueMantra on Hay

Address: 201 Hay Street, East Perth WA

Telephone No: 08 9267 4888

RSVP: Thursday 21st February, 2019 
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 – 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 11thannual national CJD conference if you were unable to attend and an update on some initiatives we are working on for genetic testing and to assist with infection control issues.

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

CJDSGN Family Meeting- Adelaide

By Meetings

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

Date:  Saturday 9th February, 2019

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

Venue: Mantra Hindmarsh Square

Address: 55-67 Hindmarsh Square, Adelaide SA

Telephone No: 13 15 17

RSVP: Thursday 6th February, 2019 
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 – 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 11thannual 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. 

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

VenueCentral 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. 

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 SpeakerProfessor 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

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. 

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.