We are setting up a fundraising page for the CJD Fun Run and every cent will go to support the project detailed below. If you want to join the CJD community of 400 + on Sunday 27th October please register below as time is running out. www.cjdsupport.org.au/fundraising/shop/cjd-fun-run/
If you want to be part of our fundraising efforts for this event, whether you are attending or not, please email contactus@cjdsupport.org.au with a photo and name of your loved one. All names will be added to the donation page and all we ask is you share the page with family and friend and ask for their support. A small donation from a large number will make a big difference to improving diagnostic tools for CJD in Australia.
Money raised by the CJD Fun Run will support the funding of a project which is aimed to improve the value of MRI as an early detection test for CJD. Using specific software the aim is to provide an earlier diagnosis and avoid additional irrelevant and unnecessary diagnostic tests which are the cause of frustration and stress for so many families. Dr Christiane Stehmann from the Australian National CJD Registry will be talking more about this project at our 12th Annual National CJD conference on Saturday 26th October, 2019. You can still register to join the conference on our website www.cjdsupport.org.au.
Only 2 weeks left to register for our CJD family conference hosted by the CJDSGN on 26th October at the Jasper Hotel in Melbourne. conference.cjdsupport.org.au/
Final numbers are needed at the very latest by Wednesday 23rd October. We now have over 100 attending but you are still welcome to register for our 12th Annual National CJD Conference for families, those at risk and health care professionals. Come along and join us as this is an opportunity to meet our researchers and other experts in the field of prion disease, help us promote awareness and show support to our research community.
For our Australian CJD families this is the last chance to send in a photo of your loved one for our memorial wall that will be shown at the conference. Final day for photos to be included is Sunday 13th October.
If you are attending the conference and also the CJD Fun Run on Sunday 27th October please let me know by early next week if you need transportation to and from the Run venue. We are organising a people mover or bus but will need final numbers.
Join our CJD family for a weekend of CJD awareness by attending the conference and joining other families by participating in the CJD Fun Run on Sunday 27th October. Register for both events on our website
www.standard.co.uk/news/health/four-patients-given-new-drug-at-uclh-to-treat-incurable-brain-dise...
Four patients given new drug to treat incurable brain disease die
Four of the six patients given an unlicensed drug never before used in humans to treat an incurable brain disease have died, it can be revealed today. The world-first treatment for sporadic Creutzfeldt-Jakob disease (sCJD) was first administered to a married father last October after University Coll...An update of the drug PRN100 from the Prion Unit in London.
www.uclh.nhs.uk/News/Pages/SixthUCLHpatienttoreceiveinnovativedrugforCJD.aspx?fbclid=IwAR0Isrvj-E...
Sixth UCLH patient to receive innovative drug for CJD
In October 2018, we began treating patients with an unlicensed antibody called PRN100 which has been developed by researchers at the Medical Research Council (MRC) Prion Unit at University College London (UCL).Memories from 3 years ago!!!! Big things again this year for the #seaoforange promoting awareness of CJD and helping support our research teams. The CJDSGN as a charity ,and only because of CJD family support, has now donated 1.3M to research, diagnostic improvements, support PhD students and so much more. So proud to be part of this CJD community that is committed to promoting awareness of CJD and support for research towards a treatment or cure. Register to join the CJD Fun Run to be part of a big voice to promote awareness on 27th October 2019 www.cjdsupport.org.au/fundraising/shop/cjd-fun-run/
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