Publications

3 weeks ago

An article about Kuru, an acquired form of prion diseasewww.natureworldnews.com/articles/48724/20211231/kuru-history-of-the-deadly-brain-disease-that-eme... ... See MoreSee Less

Kuru: History of the Deadly Brain Disease That Emerges as a Result of Cannibalism

www.natureworldnews.com

The kuru epidemic almost wiped out the Indigenous Fore people of Papua New Guinea in the 1950s and 1960s. There were two-percent deaths every year in the 1950s because of kuru. Ritual cannibalism was ...

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CJD Support Group Network

2 months ago

On 12th November in honour of International CJD Awareness Day. Remembering those Australian lost to CJD. 2021 Memorial wall www.youtube.com/watch?v=c9pSlijWsb4 ... See MoreSee Less

Memorial Wall 2021

www.youtube.com

Song- One More Light - Linkin Park

Video

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CJD Support Group Network

3 months ago

Three weeks today, Friday 12th November, is International CJD Awareness Day. Follow the link below to see how you can participate and help promote awareness. (The link will take you to our shop for awareness products, to register for an event and/or to set up a fundraising page for the month of November). In honour of International CJD Awareness Day on Friday 12th November 2021, we encourage you to promote awareness of prion disease (CJD) in the community by wearing orange and an awareness ribbon on the day, organise a local or virtual event as part of ‘CJD Fun Run’ on Friday 12th November of during the weekend of 13th/14th November and/or join our CJD Fun Run fundraising campaign during the month of November to raise funds for prion disease research in Australia. www.cjdsupport.org.au/register-your-2021-cjd-awareness-event/ ... See MoreSee Less

www.cjdsupport.org.au

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CJD Support Group Network

4 months ago

A comprehensive review of the CJD Support Group Network (CJDSGN) and Australian National CJD Registry (ANCJDR) was undertaken by PricewaterhouseCoopers (PwC) earlier this year on behalf of the Commonwealth Department of Health (Health) The final result of that review was posted today on Health's website www1.health.gov.au/internet/main/publishing.nsf/Content/E8C62244C221F228CA257BF0001ED9BC/$File/CJ...We would like to thank all of you who contributed in any way to the positive outcome from this review. Human pituitary hormone (hPH) recipients were contacted directly by Health and asked complete a survey and many were interviewed. CJD families in Australia we asked by the CJDSGN to complete a very short survey conducted by the CJDSGN and the results were provided to the review team. We were asked by the review team to provide the names of stakeholders from both Australia and overseas and we understand extensive interviews were conducted. The review team was interested in the work in Australia of the CJDSGN in supporting and assisting all affected by prion disease and the ANCJDR in providing surveillance and research. They also showed interest in the collaboration and interaction of both the CJDSGN and the ANCJDR with the global prion community. The review certainly endorsed and confirmed the important roles and contributions of both the CJDSGN and the ANCJDR provide for public health in Australia and on an international level. Contracts, to support future funding, have now been confirmed for both the CJDSGN and the ANCJDR and we are both in the process of submitting an application to seek some changes to the current contract consistent with the recommendations of the review. For the CJDSGN the most important change we want to see is an expansion of our funding criteria. We have in the past been funded through a special account only to support human pituitary hormone recipients (hPH) but as you all know our scope of work is much wider than that and all Australians affected by prion disease are reliant on the work we do.Thank you again and we are confident that due to your support we will be able to continue our work in supporting Australians affected by prion disease. ... See MoreSee Less

www1.health.gov.au

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CJD Support Group Network

4 months ago

Ryan Maddox from the US CDC commented on whether there is connection with Covid 19 vaccines and CJD in one of his talks. Thank you to our friends at the CJD Foundation US for sharing this link cjdfoundation.org/there-any-relation-between-covid-19-vaccine-and-cjd?fbclid=IwAR2cq3r_0cd80xqy8U... ... See MoreSee Less

Is there any relation between the COVID-19 vaccine and CJD?

cjdfoundation.org

A question we have been asked a lot recently is, "My loved one had CJD after they received the COVID-19 vaccine. Is there any relation between the vaccine and CJD?" Here are two trusted resources that...

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