• Experimental treatment slows prion disease, extends life of miceVery exciting research!!! As many of you know we have been communicating regularly with Eric Minikel and Sonia Vallabh and had an update via video at our annual family conference last November. Although Eric and Sonia will not be able to attend our conference again this year for personal reason they will do a video update and we hope to have a representative from Ionis, the pharmaceutical company involved with AOS to also update us. It is hoped that clinical trials may start within 5 years. Our friends at the NIH Rocky Mountain in Hamilton USA are also doing some wonderful research work. Many of you met Byron Caughey a few years ago when he presented on his work with RT-QuIC at an annual conference. I am sure you also remember Dr Cathryn Haigh and Dr Simote Foliaki, who both worked at the Collins Lab in Melbourne before relocating to NIH Rocky Mountain Lab. CJDSGN donations made possible by the generosity of so many of our families assisted both these wonderful researchers while they worked in Australia.




2015 & prior