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CJDSGN 2017 Conference Report

By | Events, News, Presentations

On behalf of the committee of the CJD Support Group Network I would like to thank the 100+ people who joined us for our 10th Annual National CJD Conference hosted by the CJD Support Group Network on Saturday 18th November at the Jasper Hotel in Melbourne.

The Genetic family meeting was attended by over 30 people on Friday afternoon.  An informal meeting, we hope it provided a safe environment for families who are affected by genetic forms of CJD, or families wanting to know more about PRNP testing.  All of our international speakers attended this meeting and after introductions and the sharing of stories there were a lot of questions and discussions.  Hopefully that means a lot of answers for many.  It was also a great opportunity for family members attending to get to know others before the conference commenced on Saturday morning.

Reading the evaluations, our audience of CJD family members, health care professionals and researchers were delighted with the variety of topics that were covered and very much appreciated our key note speakers,

We started the morning with a very thorough presentation from Associate Professor Brian Appleby (USA) ‘Overview of Prion Disease’ followed by Professor Robert Will (UK), covering risk with his topic ‘Why do people get CJD?’. Associate Professor Gianluigi from Verona in Italy gave a very encouraging presentation on RT-QuIC which is now making diagnosis of prion disease more accurate and the advancements of using RT-QuIC with Nasal brushing, not only as a better diagnostic tool but also a tool for pre-symptomatic testing for people who carry a mutation for prion disease.

The second session of the morning covered Research into treatment options. Brian Appleby gave a short overview of treatments that have been trialled or tried. Gianluigi Zanusso spoke about a trial with a FFI family in Italy ‘Presymptomatic treatment in subjects at risk of developing FFI’. The key note speaker in this session was Professor John Collinge, London UK, ‘Progress towards effective treatment for prion infection and disease’ with his talk that also covered the new experimental drug PRN 100. It certainly left us all with a lot to think about and hopefully some answers and some hope for the future.

Professor Steven Collins gave an update with his presentation covering surveillance in Australia and some related research activities.  This was followed by Professor Martin Delatycki who spoke about PRNP genetic testing in Australia and the guidelines that we have all worked together to develop that are already proving to be extremely helpful for families in Australia.

Congratulations to Professor Robert Will on being awarded a CJDSGN award ‘Champion for all affected by prion diseases’. Congratulations also to the family representatives on the committee of the CJDSGN- Josephine Farkelas and Gail Glasscock who received awards in appreciation of their commitment to other families in their roles as part of the CJDSGN.

Jenny Cooke, journalist and editor, gave an entertaining overview of the her involvement over the last 25 years, with the recipients of human pituitary hormones, the writing of her book, ‘Cannibals Cows and the CJD catastrophe’ and how like, with Hotel California, she can check out but never seems to leave the CJD community with her involvement in some way or another.

The evaluations provided excellent feedback about a presentation given by a GP, Debra Scott that provided her experience on caring for a patient with suspected CJD in the home setting. She shared what she had learnt and I am sure she will be a great advocate for families amongst her peers in the future.

We also heard from Michelle Gentle about her experiences as a theatre nurse in Brisbane and how she has learnt to implement the appropriate processes for managing surgery on a patient who is at increased risk of developing prion disease.

Suzanne Solvyns gave a short presentation on the CJD International Support Alliance that now consists of 16 associations covering 15 countries and thanked the experts who make up the Friends and Advisor Group of this alliance.  She also gave a very short overview on the structure of the CJD Support Network.

The most emotional part of the day was a memorial wall video tribute to Australians lost to CJD.  Families very generously responded to a request for photos and there was not a dry eye in the room. This was followed by a very moving talk by Catherine Grasso about the loss of her father and brother to familial CJD.

Session 5 reported on the results of the City2Sea this year and acknowledged those involved with a short video covering photos during and after the event. Over 200 people participated this year so it is great to see our number increase each year.

Our dedicated researchers, who have received CJDSGN grants to assist with funding, reported on their work and acknowledged the families who have so generously supported them and made some of this work possible. Given the challenge of reporting on science to a lay audience, the one slide policy certainly does work as each speaker has to verbally explain their work instead of the use of multiple slides. It does result in the audience being able to understand a little more of what is very complicated science. Simote Foliaki was congratulated on being able to explain his work by using the smiley faces and grumpy faces to get his story across.

And the final session of the day – Round Tables –provided those who still had questions the opportunity to speak with our speakers and researchers on a one by one basis.

The Conference Dinner that evening gave some light relief to a good but emotional day for many, with some drinks and canapes followed by a buffet dinner. This is such a great way for families to be able to get to know, in a casual setting, these wonderful and dedicated people who work in prion disease, either as clinicians, researchers or surveillance staff.

Being part of our CJD family is not something that anyway would wish for, but for those who have sadly been personally affected it is reassuring to know that those who work in the field of prion disease all over the world, are working hard to find a treatment or cure and better diagnostic tools. They do care and do very much appreciate the support that families provide in many ways.

As part of the CJD Community we can all promote awareness and be assured that together we are one voice and we can make a difference!!!!

10th Annual National CJD Conference ProgramCJD Conference_Program 2017 pdf

CJD Conference 2017 Registration

By | Events, News

Tenth Annual National CJD Conference

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

A conference on Creutzfeldt-Jakob disease (CJD) and other prion diseases for:

  • CJD family members
  • People at increased risk of developing CJD
  • Health care professionals involved in patient care or infection prevention and control.

Date: Saturday 18th November 2017. Venue: Jasper Hotel, Melbourne

To register and pay online click here CJDSGN Conference.

To register and pay offline, please download the registration form, complete and then return to contactus@cjdsupport.org.au as an attachment.  CJD_Conference 2017_Registration Form

City2Sea 2017

By | Events, Fundraising, News

Date announced for the City2Sea in Melbourne is Sunday, 12th November 2017.

Unfortunately it is the weekend before our conference but it does fall exactly on CJD International Awareness Day 12th November. Please save the date and join us again this year to promote awareness of CJD and prion disease and raise funds for our research teams.

CJDSGN T-shirts available for all who participate. Please let us know if you are coming along and start now by setting up your fundraising page.

Head to our City2Sea event page for more information.

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!