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CJD Support Group Network

2 weeks ago

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/ ... See MoreSee Less

CJD Support Group Network

3 months ago

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-us/history-of-the-cjdsgn/ ... See MoreSee Less

CJD Support Group Network

3 months ago

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