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Thank you for supporting ARSACS research

Thank you for supporting ARSACS research

Thank you to those anonymous donors who celebrated Stephanie’s birthday by giving to the ARSACS research.

"Ça va bien aller" - More than 400 stickers sold already to support ARSACS research

“Ça va bien aller” – More than 400 stickers sold already to support ARSACS research

Congratulations to Katherine Samson, mother of two children with ARSACS, for her great initiative! More than 400 stickers “Ça va bien aller” sold already to finance ARSACS research. You can order your $5 sticker via Katherine’s Facebook page. Thanks to Katherine and to all of you for supporting ARSACS research.

ARSACS patients around the world

ARSACS patients around the world

Patients from 21 different countries are registered in the International ARSACS Patient Registry. ARSACS is around the world. See map of the country of the registered patients.

Save the date Thursday, November 5, 2020- Diner des Producteurs

Save the date Thursday, November 5, 2020- Diner des Producteurs

The Diner des Producteurs, annual fundraising event for ARSACS research, will be held in Montreal on Thursday, November 5, 2020. Reserve the date.

Thank you for your ARSACS donation to celebrate Rachelle's birthday

Thank you for your ARSACS donation to celebrate Rachelle’s birthday

The Foundation would like to thank all anonymous donors who celebrated Rachelle’s birthday with a donation to support ARSACS research.

Meeting of the Foundation's Board of Directors

Meeting of the Foundation’s Board of Directors

The next meeting of the Foundation’s Board of Directors will be held in Montreal on Thursday June 4, 2020.

A new "measuring stick" for ARSACS

A new “measuring stick” for ARSACS

Dr. Cynthia Gagnon, member of the ARSACS research team, has designed with her colleagues a new set of measurements to track the ARSACS symptoms. This new index called DSI-ARSACS will help to better assess how the disease is progressing and will provide the means to compare different groups of patients. There is now a reliable and standardized test, an essential element in conducting clinical trials.  Article published in the SCA Source.

You have an ARSACS research project to submit?

You have an ARSACS research project to submit?

This is a special invitation to researchers interested in ARSACS to submit their research proposal by Friday May 22, 2020. A maximum of $100,000 for a period of one year with possibility of renewal for a second year. An application for a specific project could include several labs in Canada or elsewhere. In such a case, the $100,000 limit would not apply.

Each year, the Foundation offers annual research fellowships to advance the understanding of the disease and lead to a treatment. So send your proposal and required documents . Application and Appendix


Deadline to send your proposal: Friday May 22,2020.

Diner des Producteurs 2019 at Télé-Québec

Diner des Producteurs 2019 at Télé-Québec

The “Diner des Producteurs 2019” will be part of the Télé-Québec TV program “Un Chef à la Cabane” , Friday, February 14 at 8:00 pm. Behind the scene, the preparation of this annual benefit event with guest chef Pierre Gagnaire at work.

ARSACS International Patient Registry

ARSACS International Patient Registry

Thank you to the individuals who have responded to the email sent requesting to confirm or update their data in the ARSACS Patient Registry. If you did not have a chance to respond yet, please send an email to administrator@arsacs.com to confirm or update your data. It would be greatly appreciated. By being registered, you will be informed of any major developments and the possibilities of clinical trials. In addition, this registry builds an international network with all the positive impacts i.e. creating greater awareness of the disease, increasing research funding opportunities and generating interest from researchers and pharmaceutical companies.

Furthermore, if you or a family member has received an ARSACS diagnostic and are not registered, you are invited to do so. It is easy and simple. Go to https://www.arsacs.com/registry/

ARSACS reference article in the GeneReviews updated

ARSACS reference article in the GeneReviews updated

A new version of the ARSACS reference article in the GeneReviews is now available.

The Ataxia Charlevoix-Saguenay Foundation participates in the European Joint Programme on Rare Diseases

The Ataxia Charlevoix-Saguenay Foundation participates in the European Joint Programme on Rare Diseases

The Foundation is proud to announce that it will continue to work with the Canadian Institutes of Health Research and the European Union as part of the European Joint Programme on Rare Diseases 2020. The Foundation will fund $225,000 over a 3-year period for projects on Ataxia Charlevoix-Saguenay.  The Canadian investment  will be used to fund the participation of Canadian researchers in multinational research consortia in areas such as rare diseases.

A great success !  $1.4 Million raised to continue research  on Ataxia of Charlevoix-Saguenay

A great success ! $1.4 Million raised to continue research on Ataxia of Charlevoix-Saguenay

A great success ! $1.4 million net raised for research for Ataxia of Charlevoix-Saguenay at the 13th edition of the Diner des Producteurs . 357 guests attended the annual fundraising event held in Montreal on November 7, 2019. “On behalf of the persons affected with ARSACS and their families, I thank you for your great collective contribution” Jean Groleau, co-founder and president of the Ataxia Charlevoix-Saguenay Foundation. Press Release

ARSACS Donation On Line now available

ARSACS Donation On Line now available

Now you have the option of doing your ARSACS donation on line. An easy, simple and secure way to support the ARSACS research. Help us finding a treatment, Donate.

Dr. Thomas L. Schwarz

Funding Dr. Schwarz’s ARSACS research project

“Is SARM1 a therapeutic target for ARSACS?” another research project funded by the Foundation this year. Dr. Thomas Schwarz is at the Dept of Neurobiology at the Harvard Medical School in Boston.

Another ARSACS research project financed by the Foundation

Another ARSACS research project financed by the Foundation

The Ataxia Charlevoix-Saguenay Foundation is pleased to announce that it will finance Dr. Walid Houry ‘s ARSACS research project “Towards the Structural Determination of Sascsin” for a 2 year period. Dr. Houry is from the University of Toronto.

Launch of the International ARSACS Patient Registry

Launch of the International ARSACS Patient Registry

If you or a family member has received an ARSACS diagnostic, you are invited to register. It is easy and simple.
The registry is available in 4 languages English, French Spanish and in Italian. This is a way for you to support the cause.

Our Annual Fundraiser