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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 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.

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

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.

 

SAVE THE DATE: CJDSGN 11th National Conference

By Events, News

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

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

Registration opening soon.