Canadian Research Study - TSEngage
A new study is recruiting patients diagnosed with CJD or an inherited TSE (Transmissible Spongiform Encelphalopothy). This is the first study of its kind in Canada.
Email: TSEngage-ESTengage@phac-aspc.gc.ca
Phone: 1-855-219-7486
Resources for families
CJD Surveillance System
Public Health Agency of Canada
Telephone: 1-888-489-2999
Fax: (613) 954-5012
Email: phac.cjdsurveillance.aspc@canada.ca
U.S Foundation
CJD International Support Alliance
Terri Chaston, Co-Founder
Canadian CJD Association
(905) 306-8996
Michelle Santos, Co-Founder
Canadian CJD Association
For those interested in supporting prion research as a tax deductible donation, donations can be made:
1. Online by visiting uabgive.ca/prions
2. Calling 1-877-992-7587 and directing your gift to The Centre for Prions Activities - Dr Sim Fund, Faculty of Medicine & Dentistry.
3. Mailing a cheque payable to the University of Alberta, with The Centre for Prions Activities - Dr Sim Fund, Faculty of Medicine & Dentistry written in the memo line and mailed to:
Faculty of Medicine & Dentistry, University of Alberta
Office of Advancement
2J3.05 Walter C. Mackenzie Health Sciences Centre
8440 112 St Edmonton, AB T6G 2R7
A charitable tax receipt will be sent to you after receiving your gift. Questions? Contact us at 780-492-7587 or fomdstewardship@ualberta.ca.
How we support CJD research:
Dr Valerie Sim - University of Alberta
Funds raised are donated to the lab research of Dr. Valerie Sim, who currently works out of the University of Alberta at the Centre for Prions and Proteins Folding Diseases. Her team conducts lab research in which they use a brain slice culture model, which is ideal for studying how the stages of prion disease develop and for testing different types of treatments. They are currently working on targeting three different stages of the disease in order to find a cure:
• Conversion: During disease, prion proteins change shape and then cause other proteins to change shape. Blocking this shape-changing process (called conversion) is one target for drugs. Val and her team are testing more than one conversion inhibitor at a time, because they know if they only prevent conversion into one shape, the prion protein is able to adapt and convert into a different shape. This shape or conformation resistance in prions could be a reason that treatments have failed to date.
• Clearance: There are cell processes that try to get rid of the misshaped prion proteins as they form. Improving this clear and process is another way to treat disease.
• Cell death: As misshapen prion proteins build up in the brain, they trigger brain cell death. Using drugs that helps cells resist cell death is a third way to slow down the disease.
Val believes by focusing on all three targets, they will be successful in treating prion disease. They are currently testing compounds that are already safe in humans, so that they can quickly translate their findings to human use.
In order to better understand how prion protein takes on different shapes that result in becoming toxic and infectious, Val and her team also study details about the prion protein structure itself. In particular, they want to know whether the prion disease of deer and elk (known as Chronic Wasting Disease), poses a risk to human health.