two international studies to identify biomarkers,
essential data to initiate treatment for ARSACS
are currently funded
by the Foundation
in Canada and abroad
Thank you to those anonymous donors who celebrated Stephanie’s birthday by giving to the 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.
The Diner des Producteurs, annual fundraising event for ARSACS research, will be held in Montreal on Thursday, November 5, 2020. Reserve the date.
The Foundation would like to thank all anonymous donors who celebrated Rachelle’s birthday with a donation to support ARSACS research.
The next meeting of the Foundation’s Board of Directors will be held in Montreal on Thursday June 4, 2020.
A researcher at UNC Catalyst for Rare Diseases presents her project “Characterization TAU phosphorylation in ARSACS using a Sacsin KO model”
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.
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.
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 firstname.lastname@example.org 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/
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 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 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
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.
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.