by ARSACS | Sep 15, 2021 | Latest News
Invitation to the 6th ARSACS International Symposium to be held on November 4th, 2021. Keynote speaker Dr. Schmahmann from the Massachusetts General Hospital. Half-day virtual conferences, free registration, opened to all. See Program. Please do not hesitate to...
by ARSACS | Sep 9, 2021 | Latest News
“There is a tremendous amount of data that we have made publicly available, that we hope will be of great use to the community” Justin Wolter, ARSACS research team . “The ataxia protein sacsin is required for integrin trafficking and synaptic...
by ARSACS | Aug 28, 2021 | Latest News
On August 16, 2021, Mrs Kilolo Kijakazi, acting commissioner of the United States Social Security Administration, announced that the Compassionate Allowances Program will be expanded to included ARSACS. This applies to American citizens only. Press release.
by ARSACS | Aug 23, 2021 | Latest News
Sonia Gobeil, parent of 2 children with ARSACS and co-founder of the Foundation, shares her experience and hopes in an interview with Maxine Derksen, Hope for Ataxia – Raising Ataxia Awareness Globally
by ARSACS | Aug 12, 2021 | Latest News
Mr. Robert Banford, General Manager of the 92.5 ckaj station in Saguenay, made an important donation of $35,000 to the Foundation to continue research and to support Mr. Nicolas Claveau in his fundraising initiatives ands sporting achievements in particular that of...
by ARSACS | Aug 4, 2021 | Latest News
“Ciliary Ganglioplegic Migraine Associated with SACS Mutation” case report published in February 2021 in the Journal of Ophthalmology and Visual Sciences.
by ARSACS | Aug 4, 2021 | Latest News
Invitation to visit the new site. We hope that it will be easier to navigate where you need to go and will provide the information that you are looking for.
by ARSACS | Jul 14, 2021 | Latest News
ARSACS community is now part of the RareConnect network. RareConnect is the online network of rare disease communities that brings together patients, families and groups. Through RareConnect, patients can communicate, share experiences and information in several...
by ARSACS | Jul 6, 2021 | Latest News
From Charlevoix to the World… Invitation to all to the 6th International ARSACS Symposium on Thursday, November 4th, 2021. Keynote speaker Dr. Jeremy Schmahmann from the Massachusetts General Hospital. Half-day virtual conferences, free registration. Register...
by ARSACS | Jun 10, 2021 | Latest News
Interview with Sonia Gobeil providing insights on the creation of the Foundation, engagement of research partners, the importance of the patient registry and support groups. Interview was done by Jenny Krahn, University of Calgary for the 2021 Canadian Society for...
by ARSACS | Jun 2, 2021 | Latest News, Past Conferences
Dr. Gentil and Dr. Durham presented the results of their team’s ARSACS research at the 31st International Symposium on ALS/MND. The research, funded by the Foundation, was the work of Afrooz Dabbaghizadeh and Alexandre Paré.31st International Symposium on...
by ARSACS | May 27, 2021 | Latest News
by ARSACS | Apr 19, 2021 | Latest News
Dr. Francesca Maltecca has submitted a paper for publication entitled “Sacsin cotranslational degradation explains lack of genotype-phenotype correlation in autosomal recessive spastic ataxia of Charlevoix-Saguenay”, a project that was co-financed by the...
by ARSACS | Apr 13, 2021 | Latest News
by ARSACS | Apr 2, 2021 | Latest News
The Foundation is funding an additional research project: “Discovery of new targets for therapeutic interventions in ARSACS disease” with Dr. Nevan Krogan, University of California San Francisco (UCSF). The one year project is funded in partnership with the UCSF...
by ARSACS | Mar 26, 2021 | Latest News
Action for Ally will takeover Rare Revolution Magazine’s social media to create awareness about ARSACS and find a treatment. See you on #tuesdaytakeoverday, March 30th.
by ARSACS | Mar 24, 2021 | Latest News
The Ataxia Charlevoix-Saguenay Foundation is very pleased to announce that Mrs. Betsy Trainor has joined its Board of Directors. Mrs Trainor is a corporate attorney working for Fibertek, a high-tech company in the U.S. Furthermore, she is an author who has published...
by ARSACS | Mar 19, 2021 | Latest News
Have you ever wondered where ARSACS can be found? Even though associated initially with a region in Quebec, ARSACS can be found around the world. Based on the number of patients registered in the International ARSACS Patient Registry, we have created that cool ARSACS...
by ARSACS | Mar 8, 2021 | Latest News
In 2020, Ally was diagnosed with ARSACS. Her family has launched Action For Ally Merchandise to raise funds for research. All proceeds will go to support the Krogan Lab at the University of California San Francisco to conduct research of the mutated gene. Please Join...
by ARSACS | Feb 16, 2021 | Latest News, Past Conferences
As part of the Rare Diseases Day (February 25) organized by GRIMM, Dr. Olivier Audet will present his research findings on muscle co-contractions in ARSACS patients. Infographie (in French only).
