Latest News


Meeting of ARSACS researchers

There will be a meeting of all researchers working on ARSACS projects on April 13, 2016 in Montreal.


"Cakes and homemade pastries" event on May 26 and 27

“Cakes and homemade pastries” fundraising event for the Foundation on May 26 and 27, at the Royal Bank of Canada(Duvernay Branch) 3100 Concorde Blvd., Laval. For information or if you are interested in participating or contributing, pleae contact Karo Gagné at karo.gagne at

Dr Kalle Gehring

Dr. Kalle Gehring's research project – progress report

“High-throughput strategy to identify large domains of Sacsin” – The goal of Dr. Kalle Gehring’s project,funded by the Foundation for 2015-2016, is to identify well-behaved Sacsin protein fragments for structural studies.

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DR. Brais and Dr. Gagnon' s research project – One of the nine CIHR JTC 2015 projects

“Gene discovery to treat degenerative brain disorders” , a research project under the leadership of Dr Bernard Brais and Dr Cynthia Gagnon, is one of the nine JTC 2015 projects selected by CIHR in supporting cutting-edge rare disease research on an international base.“Gene discovery to treat degenerative brain disorders”

Dr.Slaven Erceg

Update on Dr. Slaven Erceg's project

“Cerebellar Cells Derived From Induced Pluripotent Stem Cells in 3D Culture Generated From ARSACS Patients As Faithful Disease Model” – Dr.Slaven Erceg’s research project funded by the Foundation is to generate in vitro disease model by creating ARSACS disease-specific cerebellar cells.

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Drug-screening molecules

The Foundation of Ataxia Charlevoix-Saguenay and its researchers are optimistic that a drug-screening molecules will be possible in the coming months in Montreal. Details to come.


Research in real time

The Ataxia Charlevoix-Saguenay Foundation endorses and welcomes Rachel Harding’s (University of Toronto researcher) innovative approach in opening her research notebook to the research community in real time. Like Ms. Harding who is currently working on a large protein involved in a rare disease, the Foundation believes that open real time can open new channels of communication and collaboration. Providing access to data and research tools can only help accelerate drug discovery. For more information, see Press Release and Toronto Star

Dr. Jason Young

"Sacsin Chaperone Activity" project progress

“Sacsin Chaperone Activity” project progress. Dr Jason Young’s project funded by the Foundation is to examine the ARSACS mutations in the J-HEPN fragment of Sacsin, to engineer Hsc70 to potentially identify sacsin-directed substratesand to address whether Sacsin promotes degradation of neurofilament heavy subunit (NFH).“Sacsin Chaperone Activity” project progress

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2 new members joined the Board of Directors

The Foundation is pleased to announce that Dr. Nicolas Dupré and Dr. Jacques Michaud have accepted to be on the Board of Directors. The Foundation would like to take this opportunity to thank Dr. Jean-Pierre Bouchard and Dr. Jean Mathieu for their contribution to the cause since the creation of the Foundation.
Read More – Dr. Dupré And Dr. Michaud


Therapeutical trial with a molecule offered by a biotech cie

As an outcome of the conference call held on January 12th with a biotech company, the ARSACS research team in Montreal will proceed with a preclinical trial on ARSACS mice with a molecule offered by the biotech company. More details to come.

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