Monthly Archives

February 2020

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.