The Canadian CJD Association
In support of those affected by Creutzfeldt-Jakob Disease
Creutzfeldt-Jakob Disease (CJD) is a rare, degenerative, fatal brain disease. It affects approximately one person in every one million per year worldwide.
The Canadian CJD Association is a not for profit organization which was Federally Incorporated earlier this year. We are co-founded by Terri Chaston and Michelle Santos – two people who have been directly affected by Creutzfeldt-Jakob Disease through the loss of their loved ones.
We have the support of the CJD International Support Alliance, the Canadian CJD Surveillance Centre, as well as our medical director Dr. Valerie Sim, who conducts research on prion disease and is based out of Alberta.
Our focus is to bring support to families in their time of need by having the ability to put them in touch with the medical community who specialize and understand CJD.
We provide families with support through the Surveillance Centre, and the ability to speak to others who have been directly affected for emotional support and any questions they may have based on our personal experience.
We bring awareness to a disease that isn’t well known, for families that deserve to be heard and have the support needed. As we grow, we would like to be sure that the medical communities have the ability to access further information on CJD, in hopes that it will provide further understanding of how patients are treated.