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Suzanne

Book release: ‘Creutzfeldt-Jakob disease. One case in a million’

By News

When illness enters a person’s life, it does not ring the bell, it does not knock on the door, it does not ask for permission. It just comes in. It is silent and discreet, but then suddenly it explodes, devastates, destroys and pulverises everything it encounters on its way.

Maria Gabriella lost her dad to CJD disease.

Her story and experience of the disease first became a graduation thesis that Maria Gabriella presented a few years ago at an AIEnP meeting dedicated to family members and which today has become a testimony book of dad’s illness experienced and seen through the eyes of a daughter, and the consequences that have affected and marked her family.

Maria Gabriella is a strong woman, with an enormous inner strength. Writing her story has has helped her to overcome the pain that affected her.

 

Creutzfeldt-Jakob disease. One case in a million
Author: Maria Gabriella Schirinzi
Publisher: Youcanprint
Pages: 132
Cover: soft
ISBN: 9788831659109
Version: English

Price: €17 plus shipping

 

PRNP Guidelines now published by Human Genetics Society of Australasia

By News

These guidelines have been developed by a committee consisting of representatives of clinical genetic services, genetic testing laboratories, the CJD Support Group Network (CJDSGN) and the Australian National Creutzfeldt-Jakob Disease Registry (ANCJDR). Feedback and information from the New Zealand CJD Register, Human Genetics Society of Australasia and Genetic Services is incorporated.

2019 PS03_Guidelines for PRNP genetic testing

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
    • VenueJasper 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. 

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
  • VenueSoda 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. 

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.