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!!!!
