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Events

Book Release

By | Events, News

Some of you will remember Amanda Bradley Kalinsky who came all the way to Australia for our Family Conference in 2014 to talk about her experience with Preimplantation genetic diagnosis (PGD). Amanda carries a mutation for GSS (a genetic form of prion disease) that she inherited from her father and she is determined not to pass that mutation onto her children.

Amanda has written a book- Mercies in Disguise: A Story of Hope, a Family’s Genetic Destiny, and the Science That Rescued Them– to be released on March 21st, 2107 and it tells the amazing story of Amanda and her family.

9th Annual National Conference- Saturday 12th November 2016

By | Events, News

Jasper Hotel, Melbourne

This conference on Creutzfeldt-Jacob disease (CJD) and other prion disease is for CJD family members, people at increased risk of developing CJD and health care professionals involved in patient care or infection prevention and control.

Please join us for a day of bonding, awareness and knowledge!

For CJD family members this is an opportunity to meet other families, share your stories, ask questions of the experts and gain knowledge so that you can promote awareness in the community and amongst local health care professionals. You will also gain insight into what research is happening in Australia and overseas and how we can work together to fundraise and support our research teams.

For health care professionals this is an opportunity to learn more about CJD and prion disease or help by sharing your knowledge and experience. We need champions who help promote awareness and knowledge and those of you who attend are our champions.

We also invite genetic family members or any families wanting more information on genetic testing to register for the genetic meeting on Friday 11th November 2016.

This conference is free for individuals or family members personally affected by CJD or other prion diseases.

CJD Conference 2016 Registration Form

The registration form can be downloaded filled in, saved and returned to us by email to: contactus@cjdsupport.org.au

Registration closes on Friday 4th November 2016.

To book accommodation at the Jasper Hotel please book online www.jasperhotel.com.au and use the code CJD2016 to take advantage of the special rate offered of $145 for deluxe Queen Room. For other room types call 03 8327 2777 and mention CJD conference.

Sue’s Angels run 2016 Gold Coast Marathon

By | Events, Fundraising

Join Sue’s Angels and participate in the 2016 Gold Coast Marathon on the 2nd and 3rd of July, 2016.

news_suesangels
Participate in the full marathon, half marathon, 10km or 5.7km run, sporting team shirts to raise awareness for the rapidly debilitating Creutzfeldt-Jakob Disease that so sadly cut Sue’s life short on March 25th 2015.

Sue lost her life to this horrible disease, yet so little is known about CJD. It is a one in a million terminal Prion Disease that rapidly attacks the brain and has no treatment and no cure. It stole Sue from us so traumatically just 2 short weeks after diagnosis.

The family and friends of Sue plan to take part in the 2016 Gold Coast Marathon to raise much needed funds to help find a cure and to help prevent other people’s lived being cut short from Creutzfeldt-Jakob Disease.

Get a group of friends together to start training and fundraising!

For more information, please visit the Sue’s Angels Facebook pagenews_suesangels1

 

8th Annual National Conference – Saturday 14 November 2015

By | Events

Jasper Hotel, Melbourne

This conference on Creutzfeldt-Jacob disease (CJD) and other prion disease is for CJD family members, people at increased risk of developing CJD and health care professionals involved in patient care or infection prevention and control.

For CJD family members this is an opportunity to meet other families, share your stories and gain knowledge so that you can promote awareness in the community and amongst local health care professionals. We also welcome genetic family members or any families wanting more information on genetic testing to register for the genetic meeting on Friday 13th November. This conference is free for CJD families and friends.

Download conference registration form

The registration form can be downloaded filled in, saved and returned to us by email to: contactus@cjdsupport.org.au

On Sunday 15 November you are all welcome to join with members of the CJDSGN committee, researchers, staff of the ANCJDR and other family members to participate in the City to Sea by either running and walking in the 14km or 5km events. We will again be wearing our orange t-shirts with logo to promote awareness and also hope to raise money for prion research. We hope that many of you will join us for the whole weekend!