An update from Eric Minikel and Sonia Vallabh www.prionalliance.org/2020/07/16/prion-alliance-midyear-update/?fbclid=IwAR3k6_AeD6gV5heUvS5oxSNs...
Prion Alliance mid-year update
www.prionalliance.org
Prion Alliance is a 501(c)(3) non-profit devoted to funding research towards a treatment or cure for human prion disease.It is with regret that we have had to decide to postpone our CJD family conference that was scheduled for Saturday 24th October 2020. Given the current situation in Victoria we are not confident that travel to and from Melbourne will be possible by October without any risk to speakers or attendees. We will reschedule for 2021 and post a date once confirmed. Suzanne, David and the Committee of the CJDSGN
medicalxpress.com/news/2020-07-life-severe-neurodegenerative-disease.html
A new model to predict the life expectancy of a severe neurodegenerative disease
medicalxpress.com
Creutzfeldt-Jakob disease (CJD) is a serious minority neurodegenerative disease, with an annual rate of 1.5 cases per million inhabitants, which represents approximately 11 cases each year in Catalonia. CJD is a very rapid and fatal disease, in fact, the mean life expectancy is six months after diag...We need to advise that the CJDSGN meeting planned for Perth for Friday 31st July 2020 will have to postponed. We understand that WA borders will not open until August or even later so once we have more information we hope to be able to reschedule for a date later in the year.
I want to acknowledge the passing of Dr Antony (Tony) Harding last weekend. Tony was one of many dedicated people who work in the background assisting families affected by CJD. Often the work done by these dedicated professionals goes unnoticed but I assure you that the CJDSGN and the ANCJDR were very appreciate of the work Tony did in co-ordinating brain only autopsies for NSW families. Conversations with Tony often took place out of office hours and over weekends and his dedication to his work was outstanding. Tony will be missed by many as his role was much broader than the support he gave to our CJD Community as you can see from his bio below. RIP
Doctor Antony Harding is the ASBB Manager
Dr Harding is an experienced brain bank coordinator, managing multiple brain banks under the auspices of RPAH Neuropathology, including the Multiple Sclerosis Research Australia Brain Bank. He has a BSc from the University of Adelaide, and a PhD in Teratology from the University of Sydney. Dr Harding has a long- standing interest in neurological disease. He has represented Australia at multiple World Transplant Games. He is a passionate advocate for organ donation programs, and holds multiple honorary scientific positions
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