'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. ... See MoreSee Less
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!!! ... See MoreSee Less
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. ... See MoreSee Less
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.