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.
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.
Early Bird (Closes 14th December 2018)
$125 per ticket or $1200 for a table of 10 Book after 14th December 2018
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 ... See MoreSee Less
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 ...