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.


Have you been wondering…

What is Creutzfeldt-Jakob Disease?

Who does it affect?

Are there any cures or treatments for CJD?

What can I do to help?

We are here for you.


In 2016, Michelle launched an Instagram page for the Canadian CJD Association. She initially began it in order to promote the line of clothing she designed to raise funds and awareness for CJD. Since then, we have been using the platform to connect with others around the world, and have shipped our clothing throughout Canada, the U.S, and Mexico to families wanting to raise awareness and honour their loved ones. 

In 2015, Terri started the Canadian CJD Association page on Facebook. Since then, we have had over 150 members join the group – which truly shows just how rare CJD is. Not only has this connected us with individuals in Canada, but internationally as well – proving that although the community is small, it is definitely mighty.


If you have been affected by the loss of a loved one through CJD…

you are not alone.