International ARSACS patient registry
EnglishRegistre international des patients ARSACS
FrancaisRegistro internazionale dei pazienti ARSACS
ItalianoRegistro internacional de pacientes ARSACS
Español"Dîner des Producteurs"
Invitation to the annual fundraiser for ARSACS research
To ARSACS patients to join in
two international studies to identify biomarkers,
essential data to initiate treatment for ARSACS
Read MoreSeveral research projects
There is still an opportunity to complete the PROSPAX survey. The deadline has been extended to Sunday January 31, 2021. So please take five minutes of your time to have your voice heard and be well represented in the research. Thank you very much if you have already completed the survey. It is very appreciated!
Invitation to individuals affected with ARSACS, their caregivers and health professionals to a free online presentation on Thursday January 21, 2021, 1:30pm-2:30pm “Abnormal muscle co-contraction in the lower limbs: a factor limiting the mobility of patients with Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS)”. The research results and avenues for intervention will be presented by Dr. Hébert and Olivier Audet. See Invitation for the ZOOM link. The English conference will be recorded and posted at a later date.
Article Docosahexaenoic acid in ARSACS: observations in 2 patients published in BMC Neurology. The article does not necessarily reflect the views and positions of the Foundation. It engages solely the author. The Foundation does not in any way guarantee the exactitude and reliability of the information contained in this publication. The Foundation is not responsible for the use that could be made with the information contained in this article. Finally, the Foundation is not to be held responsible for any damage caused directly or indirectly by this article or with the information that is contained.
The Ataxia Charlevoix-Saguenay Foundation is one of the 3 patient advocacy organisations participating in the PROgression chart of SPAstic ataXias (PROSPAX) research project. PROPSPAX, launched in September 2020, is a novel collaborative effort between several neurologists across Canada and Europe. Project description.
The PROSPAX survey provides an unique opportunity to have your voice heard by researchers, to make sure that the questions they are trying to answer are the ones that are important to you as a person living with the condition. The PROSPAX project will focus on two conditions – ARSACS and SPG7. However, this survey is open to anyone with any type of ataxia or hereditary spastic paraplegia (HSP). Please complete the survey (maximum 5 minutes) by January 15,2021. Click on PROSPAX SURVEY.
On behalf of the PROSPAX research team, the Ataxia Charlevoix-Saguenay Foundation thanks you in advance for participating in this survey and for your important contribution to this research project.
This year, the Diner des Producteurs, the major fundraising event for ARSACS research, did not take place due to the pandemic. The Foundation cannot resign itself to terminate medical research funding. Accordingly, the Foundation is launching today its 2020-2021 fundraising campaign with a $1.6 million objective to fund high-potential research projects as well as a clinical trial of a repurposed drug. Your help is crucial for the continuation of the Foundation and its mission. Please donate . Thank you.
As part of it mission to develop a treatment for ARSACS, the Foundation is pleased to announce the research projects to be funded in 2020-2021. Over $700K, including a $50K contribution from the Richardson Fund (University of Saskatchewan), will be allocated to these projects.
The Foundation would like to thank all the applicants for their interest in the Ataxia Charlevoix-Saguenay and for the high quality of their research submissions.
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.