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Help us start the Canadian CJD association!
Ended Oct 5, 2019

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My brother while in hospital July 2010

My name is Terri Chaston and I lost my 39 yr old brother in 2011 to Creutzfeldt-Jakob disease (CJD). It is a disease that most have not heard about, it is a terminal disease with no treatment.

Creutzfeldt-Jakob disease (CJD) is a rare form of irreversible dementia that comes on fast. It is caused by infectious proteins called prions. Prions are proteins that are naturally in the brain and are normally harmless. When they are not shaped properly they can have devastating effects. They can attack the brain, kill cells and create gaps or holes in brain tissue. 

This disease robs our loved ones of their ability to speak, walk, and function on their own. It is incredibly difficult to watch someone you love pass from this disease as it essentially steals them away from us while they are still here.

In 2010 my brother started showing signs that we thought were psychological, we had him admitted to hospital for treatment of what we thought was depression but with some strange physical characteristics (mixed up words, not remembering key people or moments from our lives). Not long after being admitted we heard the  three words being said to us that this could possibly be what my brother was suffering from, Creutzfeldt-Jakob disease.

We had tests run and they came back negative we watched him decline for the next 16 months while he remained in hospital with no way of knowing what was wrong with him or what treatment could help.

We visited every day and every day brought us something different. It was a true roller coaster of emotions as you really are greiving the loss of this person while they are still alive.

We did everything as a family to be sure that he was comfortable, cared for and that the Dr's exhausted every test imaginable to try to find a cure for what was happening with him, then in June of 2011 he aspirated and we stayed by his side until he passed.

We still had no answers as to what had caused this to happen to a young man of 39. I had to explain to his 5 young children that their Dad had passed, (that was one of the most difficult things I had ever had to do) and I couldn't even explain to them why.  I had no answers... This is my personal story, but there are so many like it in Canada and all over the world.

For months my family felt alone, no understanding as to why this was happening, what to expect, no documentation to explain how this terrible disease worked nothing. Just alone in our grief..

Several months later we received the results of my brothers autopsy that confirmed sCJD, we now had answers but didn't understand how, why or when he would have come in contact with this disease. I did some research and found some very valuable tools in the U.S and a amazing support group of families on facebook that had experienced the same loss, they helped me understand the disease better and helped with the grief but I couldn't help but think why was there not a support system for families in Canada?

It was then that I decided that something had to be done. Families here needed help, they need to be able to speak with someone directly who has been affected by this disease, they need access to specialized Dr's that understand this disease that are based here, they need literature and to know that they are not alone. This disease needs awareness!!!

This is how all of this has come to be, I have been in contact with some amazing people from CJD foundations and alliances all over the world who are supporting the start up of this association here in Canada. I have another family from Winnipeg that has joined my journey as the co founder of our association who has been working very hard to help us get the association up and running. Michelle Santos lost her mother of SCJD. I am beyond happy and grateful to have her as my co founder. 

We also have a top researcher on board as our medical director Dr. Valerie Sims from Alberta. she has committed to helping us with families here that require her expertise. Valerie will play a key role in connecting us and the clinical world.

So now here is why we are fundraising,, in order to start a not for profit charity here in Canada there are many legal documents that must be filed, they need to be reviewed by a lawyer and there are costs associated with filing paper work with the government to start this journey. We also want to have a website so that families here know about us and we can be there to help.

This is a onetime plea for help to get us going, (although we do hope that you will continue to support us as we provide help with the families here in Canada)

Any donation would be appreciated. We are doing this to be sure that no family is alone, that they have the resources available to them, to bring awareness to a disease that has many faces and yet is so unknown  and in hopes that one day they find a cure!

Thank you in advance for your consideration, my very best to all of you.

Terri Chaston (co-founder) of the Canadian CJD Association

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