by ARSACS | Sep 3, 2025 | Latest News
We are pleased to present Dr. Javier Santos’ research project report, entitled “Biophysical and functional study of Sacsin Trojan fragments as a protein complementation and phenotypic rescue strategy for ARSACS.” This project was funded by the Foundation for the...
by ARSACS | Aug 26, 2025 | Latest News
People living with a ARSACS (or parent/guardian) are invited to take part in an online survey about gene therapy. 🔹 Purpose: to gather opinions that will help shape future research projects and clinical trial design⏳ Duration: ~30 minutes – anonymous🗓️ Deadline: End...
by ARSACS | Aug 19, 2025 | Latest News
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by ARSACS | Aug 6, 2025 | Latest News
We are pleased to present Dr. Marina Crispo’s research project report (Institute Pasteur de Montevideo, Uruguay), entitled “Avatar mouse model of a new genetic variant of ARSACS detected in Uruguay”. This project was funded by the Foundation for the...
by ARSACS | Jul 31, 2025 | Latest News
We are pleased to share the scientific article entitled ” Sacsin deletion decreases cell viscoelasticity and motility in a glial cell model of autosomal recessive spastic ataxia of Charlevoix Saguenay”, based on the work of Dr. Federico Herrera and...
by ARSACS | Jul 22, 2025 | Latest News
Dr. Benoit Gentil (McGill) was recently awarded significant funding for a project aiming to develop an RNA-based therapeutic approach for ARSACS using nanoparticle technology. This project is being carried out in collaboration with QurCan Therapeutics and Genome...
by ARSACS | Jul 10, 2025 | Latest News
In this issue, discover the latest updates from the Foundation, including a newly published scientific article on ARSACS, a preview of the upcoming 2025 Diner des Producteurs, and details about our upcoming participation in the WODC Europe in Amsterdam. Read it...
by ARSACS | Jul 7, 2025 | Latest News
Natalie and Rachael Seals, who are personally affected by ARSACS, are starting an online support group. Upcoming Zoom meetings: Saturday 2 August at 10am Saturday 4 October at 10am Registration required to join. For details or to sign up:...
by ARSACS | Jul 2, 2025 | Latest News
The Schmahmann Laboratory (Massachusetts General Hospital Ataxia Center, Boston) is conducting a study to validate a new tool for assessing emotional aspects related to the Cerebellar Cognitive and Affective Syndrome (CCAS). Who can participate?👉 English-speaking...
by ARSACS | Jun 18, 2025 | Latest News
We are proud to announce our participation to the World Orphan Drug Congress (WODC) Europe, which will be held this October in Amsterdam. A booth will be displayed to engage with attendees and raise awareness about our mission among international stakeholders in the...
by ARSACS | Jun 5, 2025 | Latest News
We are pleased to share a review published in the journal Annals of Neurology on autosomal recessive cerebellar ataxias, including ARSACS. Read article here
by ARSACS | Jun 3, 2025 | Latest News
A research article from a project funded by the Foundation in 2022–2023 has just been published. This study on cellular models of ARSACS also led to Dr. Fernanda Murtinheira successfully defending her PhD. Congrats to Drs. Fernanda and Federico Herrera for this...
by ARSACS | May 28, 2025 | Latest News
Read about this recent scientific publication on ARSACS.The research featured in this article was funded by Associazione ARSACS ODV – Italy, a foundation established by one of the members of our Board of Directors, Dr. Paolo Arrigoni.Read the article
by ARSACS | May 12, 2025 | Latest News
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by ARSACS | May 12, 2025 | Latest News
Last April, Sonia Gobeil was interviewed by CheckRare during the World Orphan Drug Congress (WODC). This is a valuable opportunity to raise awareness for ARSACS (Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay) and to highlight the importance of ongoing...
by ARSACS | May 5, 2025 | Latest News
From April 22 to 24, the Ataxia Charlevoix-Saguenay Foundation was present at the World Orphan Disease Congress (WODC), a major event gathering global leaders in the field of rare diseases and orphan drugs. We had the privilege of: Presenting the progress in the...
by ARSACS | Apr 22, 2025 | Latest News
A research project led by Dr. Benoit Gentil and funded by the Foundation will be presented at the American Society of Gene and Cell Therapy (ASGCT) annual meeting, a key event in the field of gene and cell therapy. In parallel, we are making the presentation video...
by ARSACS | Apr 9, 2025 | Latest News
The final report of the research project “Discovery of New ARSACS Modifier Genes in the Saguenay Founder Population” led by Dr. Simon Girard is now available. Funded by the Foundation for the 2023-2024 period, this project has provided genealogical data for 166...
by ARSACS | Apr 3, 2025 | Latest News
In this edition, dive into recent scientific articles and discover our upcoming initiatives to support research. Read it now
by ARSACS | Apr 1, 2025 | Latest News
A huge thank you to Ms. Annie Tardif for her outstanding commitment! On March 23, she organized a Zumbathon in honor of a family close to her with two children affected by ARSACS. All donations were given to the Foundation to support research and families impacted by...
