Raising awareness of CJD in honour of Helen Venardos
20.05.1962 – 16.04.2023
Our cherished mum, daughter, sister, aunt & friend Helen Venardos was born in Benalla, Victoria, Australia on 20th May 1962.
Helen moved to Sydney with her family at the age of 3, and spent the rest of her life there.
Helen was always the glue bringing people together in both her family and friendship groups, and was often referred to as the ‘hostest with the mostest’, being hospitable and generous to everyone around her. Helen was also known for lighting up the room with her infectious laugh and vibrant smile. However her most prized joy of life was being a mum to her two daughters – dedicating everything in life to them whilst raising them on her own playing the role of both mum and dad.
Helen unknowingly started showing signs of CJD in May 2022, just after she turned 60, with a bad case and sudden onset of insomnia. Fast forward to February 2023 through to her final breath in April, it escalated aggressively – moving too quick for us to even keep up with.
In the true spirit of Helen, she fought til the very end – with some of her final sentences before she became non-verbal to her family stating “I’m going to fight this”.
The reason we are able to know Helen had CJD was because of previous funding from families who have been affected by CJD, which enabled more advanced and specific test For CJD called RT-QuIC now available through the CJD Registry in Melbourne. So, we are looking to pay it forward – in hopes one day we can find treatment and cure. Let’s find a way to end CJD being known as a 100% fatal disease
Total raised so far to support CJD Research in Australia- 108 donations to total $10,595.00
The CJDSGN guarantees that every cent received will go directly to support the CJD Research Teams in Australia, improvements in diagnostic tools or the work of the CJDSGN in supporting families affected by CJD. The family will be notified of your donation and consulted on the allocation of funding.
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