The CJD Experience

Welcome to the website dedicated to supporting all families affected by Creutzfeldt-Jakob in Australia.

This section of the CJD Support Group Network website is the contribution of the family of Graham Brown who died of familial CJD (occurring in families) on the 23rd of August 2004. It is dedicated in his loving memory to the family, friends and caregivers of people who are dying or have died of CJD.

We hope that we are able to provide encouragement and comfort as you develop your understanding of CJD, prepare for your loved one’s death, and enter the grief experience.

The Lethal Gene

Published in the Sydney Morning Herald on 24th October 2005 – author ‘Jennifer Cooke’: Download here

Families Stories

Mandy's Story

This is Mandy’s story. It details the journey through her father’s fCJD experience. Written with a deep love and respect for her father, it highlights her personal feelings, thoughts and beliefs as she and her family cared for her father in his final months and experienced his death on August 23rd, 2004.

You can download Mandy's Story as a PDF file here.

Ruth's Story

This is a very personal piece of writing consisting of a diarised account of the last 2 weeks of Graham Brown's life as experienced by his wife Ruth.

You can download Ruth's Story as a PDF file here.

No White Flags

In loving memory of Helen Ferry

You can download No White Flags as a Word DOC file here.

Catherine's Story

This is Catherine's story.

You can download Catherine's Story as a Word DOC file here.