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Exciting and encouraging news from the Prion Unit in London. 2 more patients have started on the drug that was first used on one patient in October. Currently this drug is only being used on sporadic cases in UK under the NHS but it does give great hope for the future of a treatment or cure.
www.uclh.nhs.uk/News/Pages/TwomoreUCLHpatientstoreceivepioneeringtreatmentforCJD.aspx?fbclid=IwAR...
Two more UCLH patients to receive pioneering treatment for CJD
uclh.nhs.uk
In October 2018, we began treating a patient with sporadic CJD with a drug which had not been used in humans before after a judge confirmed that it was lawful and in the patient’s best interests to receive the unlicensed treatment.A Night With The Champions 2019
Early Bird closes this Friday!!
If you haven't already got your tickets, get in quick before Early Bird closes this Friday 14 December.
If you missed our previous email, click here for more information on the event.
Prices
Early Bird (Closes 14th December 2018)
$125 per ticket or $1200 for a table of 10
Book after 14th December 2018
$150 per ticket or $1450 for a table of 10
cjdchampions.cjdsupport.org.au/
cjdchampions.cjdsupport.org.au
Supporting CJD research and awareness Our ChampionsOur VenueOur ChampionsDAVE O’NEILMaster of CeremoniesDave is an Australian stand-up comedian, actor, bass guitarist, writer and radio personality, known for his TV appearances on Tractor Monkeys, Spicks and Specks, Rove Live and Good News Week. He...Just a reminder if you would like to join us for a support group meeting in Brisbane on Saturday 15th December to please register before 13th December. Details: www.cjdsupport.org.au/blog/2018/11/13/cjdsgn-meeting-qld/
This is an informal meeting that will give all CJD families members a chance to meet with others who understand your journey, share your story and offer mutual support. For those of you who have attended meetings and conferences in the past we hope that you will also come along to help us to support the new families who unfortunately continue to have their lives touched by this monster of a disease. David and I will be there to try and answer any questions and will be happy to provide a general update and also an update on the annual national CJD conference held in Melbourne on 24th November. For those at risk and genetic family members we will also provide information on some initiatives we hope to introduce to assist those who suffer delays accessing health care. We look forward to welcoming you. Suzanne
cjdsupport.org.au
You are invited to attend a CJD Support Group Network (CJDSGN) meeting. Hosted by: Suzanne Solvyns and David Ralston – representing the Committee of the CJD Support Group Network. This meeting is an informal meeting where you will have the opportunity to ask any questions, share your stories with ...Thank you to every one who participated and attended our 11th Annual National CJD Conference at the Jasper Hotel in Melbourne last Saturday 24th November. We will be posting photos, the program and hopefully most of the presentation on our website shortly and will provide the link here for those of you who are interested.The evaluation forms certainly acknowledged Professor Richard Knight from Edinburgh UK and Dr Valerie Sim from Alberta, Canada as the outstanding speakers on the day and we are very grateful to them both for fitting a visit to Australia into their busy schedules. 80% of the 100+ attendees rated the day as excellent and we will certainly take on board some of the suggestions. Congratulations to Professor Richard Knight on the well deserved CJDSGN Legend Award for 2018 and congratulations to Dr Mark Davis (Neurogenetics Unit in Perth) for the '2018 Champion for families' award for the caring and compassionate way he is assisting families with PRNP (DNA) testing. Thank you also to Professor Steven Collins, Professor Colin Masters for reviewing 25 years of surveillance and to our Australian research community who acknowledge their appreciation of CJDSGN funding that is only possible because of the generosity of families. Thank you also to the committee of the CJDSGN for your support and help on the day. Suzanne
www.sciencedaily.com/releases/2018/11/181120125755.htm
Eyes of Creutzfeldt-Jakob disease patients show evidence of prions
sciencedaily.com
By the time symptoms of sporadic Creutzfeldt-Jakob disease (sCJD) are typically discovered, death is looming and inevitable. In a new study, researchers report finding tell-tale evidence of the condition's infectious agent in the eyes of deceased sCJD patients, making the eye a potential source for....© 2018 CJD Support Group Network Australia.
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