CJD Support Group Network in Glenhaven, New South Wales, Australia | Non-profit organisation

CJD Support Group Network

Locality: Glenhaven, New South Wales, Australia

Phone: +61 1800 052 466

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25.01.2022 Sharing a post by Debbie Yobbs, president of the CJD Foundation USA Highlights from Ionis Investors Day: ION716: Potential to be first approved treatment for prion diseases Designed to reduce production of prion protein, root cause of prion disease Pursuing pre-symptomatic (genetic carriers) and symptomatic (genetic and sporadic) indications... Pivotal study planned for 2021, design should provide a rapid path to market. https://www.biospace.com//ionis-highlights-achievements-/ See more

23.01.2022 Tomorrow is International CJD Awareness Day. Please wear orange and take the time to educate just a few more people about this devastating disease that takes the life of more than 50 Australians and about 8 of our New Zealand friends each and every year. CJDSGN has run an education program since 2008 but it is you, CJD family and friends and those at risk of CJD, who can make the most impact by promoting awareness. In honour of this day we will be posting our updated versi...on of the memorial wall. Sadly this becomes longer each year but it is important to honour those lost and keep striving and supporting our researchers towards a treatment or cure so other families do not have to suffer as many of you in this group have. We are a very strong CJD family and global community and in Australia we have developed incredible bonds between our CJD families, those at risk, our surveillance unit and our amazing prion disease researchers. This bond grows stronger every year. Together we can make a difference. See more

22.01.2022 https://www.ualberta.ca//2/october/creutzfeldt-jakob.html

17.01.2022 Post for 12th November, International CJD Awareness Day - CJDSGN committee Today seems the appropriate day to acknowledge the committee of the CJDSGN. Most of you know me, Suzanne Solvyns, Director, CJDSGN as I am the voice on the phone the one responding to emails, msgs and PM via FB but there is an amazing team that support me as members of the CJDSN committee. First we have David Cjdsgn, who many of you have met at Face to face meeting or know as the one chasing me up to... keep on schedule at or usual - annual conference. David is chair of the Management Committee of the CJDSGN. We also have Gail who is a CJD family member and on the executive committee of the CJDSGN. Gail is not yet on FB, we are working on it, but i am sure Ashleigh McKenzie will forward this on. Susan, like David and me is at increased risk of medically acquired CJD and we also have newly appointed earlier this year CJD family members. Colleen Byrne O'Hara and Lyntara Quirke thank you for joining us and for your contributions. Professor Steven Collins, as our medical director has assisted so many of you particularly in reviewing MRIs in his role as our medical director. Our long time now, and life member, infection control advisor, Joe Bendall has assisted so many at risk patients and continues her commitment to help and our newest and very valuable palliative care advisor Deb Scott who has already assisted several patients and their families and made a difference to what is a very difficult journey. So to find out more about this amazing team I work with please check out the website link below.https://www.cjdsupport.org.au/about-/history-of-the-cjdsgn/ See more

16.01.2022 The CJDSGN offers support, information and assistance for family members and friends of patients suffering with suspected CJD and other prion disease and for those at increased risk of developing CJD in Australia. The primary goal of the CJDSGN is to be part of your support system and assist you in any way that we can. So often this disease progresses so rapidly and many questions go unanswered or options are not explained. We are here to help but we can only do that if y...ou reach out to us! We also provide a CJDSGN facebook group. This is a closed group that ensures that your posts are only shared with members of the group. The group comprises of family members and experts who are eager to help and answer your questions. but remember this is only a small part of the support and assistance that the CJDSGN in Australia can provide for Australian families affected by prion disease (CJD). To receive an information package for families, ongoing support if you are dealing with a loved one suffering with suspected CJD or assistance with an infection control issue - call our National Toll Free Helpline 1800 052 466; email- [email protected] or send a message via our website www.cjdsupport.org.au

12.01.2022 Eric Minikel and Sonia Vallabh have just announced that improvements to PrionRegistry are now live and now has translation into 3 other languages. Volunteer for research to help fight prion disease Join the Prion Registry, an online registry for people affected by or at risk for prion disease who want to find opportunities to participate in research.https://prionregistry.org/

12.01.2022 https://science.sciencemag.org/content/370/6512/32

12.01.2022 Our amazing, dedicated and a lovably crazy researchers and surveillance staff in Melbourne had a Zoom Meeting today in honour of International CJD Awareness day and sent us all these photos of them wearing Orange today in memory of those lost to CJD in Australia. They are thinking of you and your loved ones lost to CJD and are forever grateful for the funding support from families for prion disease research and improvements with diagnostic Tools. The very special bond between CJD families, those at risk, our research community and our surveillance unit grows stronger every year and as a team we are making a difference promoting awareness and working towards a treatment or cure.

07.01.2022 In honour of International CJD Awareness Day, 12th November, our tribute to loved ones lost to CJD in Australia - Memorial Wall 2020 https://www.cjdsupport.org.au//2/11/11/memorial-wall-2020/