Deana Simpson and I, Co-Chairs of the CJD International Support Alliance, are posting this message on behalf of Madeline Williamson. We want to encourage genetic prion disease family members to take a moment to logon to www.prionregistry.org and participate in her research study: Challenging the Huntington Disease Paradigm: Evaluation of Psychosocial Issues in Persons at-risk for Genetic Prion Disease. Conducted by Case Western Reserve University.
The study will continue through the end of this year; however, Madeline graduates in May 2019 and wants as much data as possible to present her initial findings as part of her final project.
Those of you with genetic prion disease in your families know all to well the psychosocial issues that patients and families face as you navigate your journey with these genetic conditions. Thank you for considering - see message below from Madeline:
'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
After conferring with experts in the scientific community (who are are experts in prion disease known as ‘Friends and Advisors’ of the CJD International Support Alliance), Deana and I recommend that we maintain a cautiously optimistic point of view. In the scientific community, it is important to have independent reproduction and testing of research findings – repeatability leads to confidence in findings. This claim has been around for some years and to date there is no evidence of validation by other researchers. What we will say is that there is a great deal of work going on within the research community as we have seen with the human treatment happening in the United Kingdom, the great work that Eric and Sonia are doing and their hopes of a human trial in the near future, and now this claim. We will remain watchful of all the important work that is happening and hopeful for a treatment or cure. Today's media story on this topic. exclusive.multibriefs.com/content/professor-claims-cure-for-cwd-but-others-arent-sure/waste-manag...... See MoreSee Less
The United Sportsmen of Pennsylvania (USP) turned a lot of heads in the hunting community during a press conference at the state capitol in Harrisburg in February when they announced that a cure to Chronic Wasting Disease (CWD) may be close at hand. The group declared that Dr. Frank Bastian of the L...
This may be amazing news!! A protential cure of CWD in deer and Elk that they claim will lead to a cure for CJD. Deana and I are checking with the experts and plan for the CJDISA to put out a statement as soon as we can.
Great to see three of our CJD family members right in the front cheering on the race!! I am sure the champion event was a very successful and wonderful night. Photos to follow. Congratulations to the Heagerty family for another wonderful event that brings families together but also raises much needed funds for prion disease research in memory of Catherine Heagerty. It touches my heart to see how many other CJD families continue to support this event each year...the numbers keep growing. Great effort and thank you to Gail for representing the CJDSGN at this event.