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For any genetic family members in Australia who are interested in research and participating in research and studies you can register at www.prionregistry.org
Please see below details of one study that is currently availably and seeking participation. If you can help please follow the link on the CJDSGN website www.cjdsupport.org.au/resources/research/prion-research-study/
'My name is Madeline Williamson and I am a second-year student in the Genetic Counselling Training Program at Case Western Reserve University based in Cleveland, Ohio, USA.
I am seeking participation in a study to examine the psychosocial experience of being at-risk for a genetic prion disease. Eligible participants for the study will include those who are in one of two groups:
those who are at-risk for inheriting a mutation based on family history, but have not undergone predictive testing and
those with a mutation confirmed by predictive testing, but who are not yet symptomatic.
Participants can access the anonymous online survey by visiting the study listings page at www.prionregistry.org. Results of this study will aim to inform the medical community and advocacy organisations on best practices in predictive testing and increase knowledge of the unique psychosocial of being at-risk for a genetic prion disease.
cjdsupport.org.au
My name is Madeline Williamson and I am a second-year student in the Genetic Counseling Training Program at Case Western Reserve University based in Cleveland, Ohio, USA.1st successful Champion fundraising event in 2017. 3rd annual event coming up on Friday 1st March 2019. If you want to join the fun and raise money for prion disease research book your tickets on www.cjdsupport.org.au . See you there!!!
Thank you for those who attended our SA meeting today. A few tears but some nice bonds made and hopefully some questions answers. It was nice to be able to share some current research studies that may offer some hope in the future.
Sad news from Edmonton!!!
globalnews.ca/news/4933165/edmonton-mother-rare-dementia-dies/
Young Edmonton mother with rare form of dementia passes away
globalnews.ca
Sabrina Lauman died in hospital on Monday afternoon, surrounded by her family.For those of you who attended our 2018 conference in November you will remember Dr Valerie Sim talking about her patient who was pregnant and suffering with CJD . This is such a sad and moving story but also a story that unites CJD families with a bond of love and support globally.
globalnews.ca/news/4872831/edmonton-mom-sabrina-lauman-dying-dementia-healthy-baby/?utm_medium=Fa...
Alberta mom dying of rare dementia gives birth to healthy baby
globalnews.ca
Her doctors didn't think she would live long enough to give birth to a healthy infant but Sabrina Lauman's baby girl was born earlier this month.© 2019 CJD Support Group Network Australia.
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