From American Council on Science and Health:
The Next Plague: Prions Are Tiny, Mysterious And Frightening
Congratulations to Prof Colin Masters AO, for his groundbreaking work in Alzheimer’s disease and his many years of dedication to prion disease research..
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.
By Suzanne Solvyns/ Professor Martin Delatycki/ Dr Christiane Stehmann
What does that this mean for you if a blood relative died of CJD or other prion disease?
A blood relative had a genetic form of CJD or other prion disease:
If your relative died of confirmed genetic CJD or other prion disease you will be deferred from donating blood unless you have undergone predictive genetic testing and had a normal prion protein gene ( PRNP) result (no mutation detected).
A blood relative with confirmed or suspected CJD or other prion disease without testing of the PRNP gene:
If your relative died from confirmed or suspected CJD or other prion disease without PRNP testing on DNA to rule out a mutation for prion disease you will be deferred from donating blood unless you undergone predictive genetic testing and had a normal PRNP result (no mutation detected).
A blood relative with confirmed or suspected CJD or other prion disease with documented normal testing of the PRNP gene (No mutation detected):
If your relative died of confirmed or suspected CJD or other prion disease and diagnostic PRNP testing confirmed that your relative did not have a mutation for genetic prion disease you and other first and second degree blood relatives can donate blood.
If I now qualify to donate blood what do I need to provide to the ARCBS?
You will have to provide documentation of PRNP test results, or a letter from a genetic service which confirms that either you, or your relative who died of CJD or other prion disease, had a normal PRNP test result (no proven mutation for prion disease). Once this is logged on the ARCBS database you will no longer be deferred from donating as long as you can fulfill other eligibility criteria. http://www.donateblood.com.au/eligibility
If you are not sure if testing was been done or your family received the results verbally but have no documentation please call 1800 052466 or email contactus@cjdsupport.org.au.
The ARCBS has advised the following:
To clarify the precise change, the previous guideline stated that prospective donors were excluded if they had a family history of CJD in a first or second degree relative, with the following three specific exceptions:
- The relative had variant CJD.
- The relative had a recognised iatrogenic cause for their CJD.
- The donor has a documented normal genetic polymorphism for PrPc (i.e. in the PRNP gene).
The new updated guideline, as of 13 March 2016, expands the third exception to include the affected relative as well as the donor:
- The relative had variant CJD.
- The relative had a recognised iatrogenic cause for their CJD.
The donor, or their affected relative (index case), has a documented normal sequencing of the PRNP gene and no abnormal mutation was found.
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.
Join Sue’s Angels and participate in the 2016 Gold Coast Marathon on the 2nd and 3rd of July, 2016.
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 page
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!
We have started a CJD Support Network Group in addition to our Facebook page, and you are all invited as family members and friends to join this group to share personal stories and offer mutual support. This is a closed group as our aim is to provide a safe environment for support and sharing. This is a group for those personally affected by CJD and other prion disease and those of you who are members of this site already I know you will support new families members who unfortunately will continue to join our ‘family’.
We look forward to welcoming you all to the CJDSGN group page!
Support Team Prion
Take advantage of the launch special and enter to participate – http://www.thecity2sea.com.au/
Support Team Prion – https://city2sea2015.everydayhero.com/au/team-prion-1 – to raise money for CJD research in Australia.
