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CJDSGN Meeting- QLD

By | Events

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 as a general update and this will also provide the opportunity to discuss any infection control issues and ask questions. We will also provide an update on changes to support we are offering in regard to access to health care without delays when high infectivity tissue is involved.

Date: Saturday 15thDecember 2018

Time:  2pm to 5.30pm – afternoon tea will be provided

VenueCentral Dockside Apartment Hotel

Address: 44 Ferry Street, Kangaroo Point QLD

Telephone No: 07 3891 6644

RSVP:   Thursday 13th December 2018

Final numbers will be required for catering purposes by this date.

Email: s.solvyns@cjdsupport.org.auor call the toll free number 1800 052466

The 1800 052466 will be diverted to my mobile in case you need to make contact on the day of the meeting. 

Registration Now Open- 11th Annual National CJD Conference

By | Events, News, Presentations

CJD Support Group Network’s 11th Annual National CJD Conference

Registration is now open for the 11th Annual National CJD Conference. 

Join us to honour 25 years of support and surveillance in Australia.

– BOOK TICKETS ONLINE: CJDSGN SHOP

– TO BOOK TICKETS VIA EMAIL/MAIL/PHONE : CJD_Conference 2018_Registration Form 

 

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.

For CJD family members this is an opportunity to meet with other family members, share your stories, get answers to those outstanding questions from world experts, nd out what research is happening and how you can help by raising funds, promoting awareness and educating your local health care professionals.

For those at increased risk of developing CJD an update on iatrogenic (medically acquired CJD) and expert advice on how the CJD infection control guidelines affect you.

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 our conference are our champions.

Friday 23rd November, 2018 – Meeting for Genetic CJD family members.
Saturday 24th November, 2018 – All day meeting for CJD families, people at increased risk of developing CJD and Health Care Professionals involved in patient care or infection prevention and control.

Key Note SpeakerProfessor Richard Knight, Professor of Clinical Neurology, University of Edinburgh and UK National CJD Surveillance Unit.

  • Free for those at risk and CJD family members.
  • Registration for Health Care Professionals – $60 for the full day.
  • Location- Jasper Hotel, Melbourne

CJDSGN Family Meeting- Sydney

By | Events

You are invited to attend a CJD Support Group Network (CJDSGN) family 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 other family members who understand the difficult journey called CJD and link in with other family members for 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.

This is also a good way to meet others in advance if you plan to attend the Annual National CJD Conference on 24thNovember 2018.

Date:  Saturday 22rd September 2018

Time:  2pm to 5.30pm – afternoon tea will be provided

Venue: Kirribilli Club

Address: 11 Harbourside Crescent, Lavender Bay NSW 2060 (Parking is available under the club)

Telephone No: 02 99552245 

RSVP:   Thursday 20th September 2018

Final numbers will be required for catering purposes by this date.

Email: s.solvyns@cjdsupport.org.au or call the toll free number 1800 052466

The 1800 052466 will be diverted to my mobile in case you need to make contact on the day of the meeting. 

CJDSGN Meeting- Sydney

By | Events

You are invited to attend a CJD Support Group Network (CJDSGN) family meeting.

Hosted by:  Suzanne Solvyns and David Ralston – representing the Committee of the CJD Support Group Network.

This meeting is an informal meeting as a general update and this will also provide the opportunity to discuss any infection control issues and ask questions. We will also provide an update on changes to support we are offering in regard to access to health care without delays when high infectivity tissue is involved.

Date:  Saturday 22rd September 2018

Time:  2pm to 5.30pm – afternoon tea will be provided

Venue: Kirribilli Club

Address: 11 Harbourside Crescent, Lavender Bay NSW 2060 (Parking is available under the club)

Telephone No: 02 99552245

RSVP:   Thursday 20th September 2018

Final numbers will be required for catering purposes by this date.

Email: s.solvyns@cjdsupport.org.auor call the toll free number 1800 052466

The 1800 052466 will be diverted to my mobile in case you need to make contact on the day of the meeting. 

Cocktails, Canapés and Comedy for CJD Research

By | Events, Fundraising, News

In Memory of Jenny Duckworth

After raising $18k last year for CJD research, this year the Duckworth family are aiming to raise $50k to fund local researchers in Australia.

CJD is a rare, degenerative and fatal brain disease, that affects 2 in a million people every year.

Due to the rarity and aggressive nature of this disease, funding for research is sadly limited to donations.

Since losing mum Jenny Duckworth to CJD in 2016, her children have inspired a vision that no other family will have to go through what they did.

Please join them on Saturday 17th November as they host a night of cocktails, canapés and comedy, to raise much needed funds for CJD research.

To find out more about the event and purchase tickets, click here.

To donate in memory of Jenny Duckworth, click click here.

 

SAVE THE DATE: CJDSGN 11th National Conference

By | Events, News

CJD Support Group Network’s 11th Annual National CJD Conference

Friday 23rd November, 2018 – Meeting for Genetic CJD family members.

Saturday 24th November, 2018 – All day meeting for CJD families, people at increased risk of developing CJD and Health Care Professionals involved in patient care or infection prevention and control.

Key Note SpeakerProfessor Richard Knight, Professor of Clinical Neurology, University of Edinburgh and UK National CJD Surveillance Unit.

  • Free for those at risk and CJD family members.
  • Registration for Health Care Professionals – $60 for the full day.
  • Location- Jasper Hotel, Melbourne

Registration opening soon.

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