Several researchers from different countries participated in the 4th Symposium on ARSACS held on November 10 & 11, 2016 at the Neuro in Montreal. This conference provided an opportunity for researchers to share their knowledge and to discuss the progress of their respective research.
A representative from the University of North Carolina attended the Symposium given the current discussions with the university for a potential agreement to do ARSACS research in 2017.
Two independent experts from the world of pharma and the University of Oxford were present as observers on behalf of the Foundation. These experts will provide a report to the Foundation to target the most promising research projects and to advise on next steps for preclinical and clinical trials.
Dr. Alanna Watt, member of the ARSACS research team, will be presenting the new ARSACS findings as a poster at the Neuroscience 2015 meeting. The annual meeting of the Society of Neuroscience will be held in October 2015 in Chicago. See New findings abstract.
An interdisciplinary conference on neuromuscular diseases and amyotrophic lateral sclerosis was held on April 16 & 17. This event was attended by professionals who specialize in the care of patients with neuromuscular disease and ALS. ARSACS was the topic of discussion at several occasions.
An international working group met on March 25 in the UK to discuss clinical measures that could be used to establish the efficacy of drugs in the treatment of Ataxia of Charlevoix-Saguenay. This special meeting was held within the framework of the International Meeting for Research on ataxia organized by several associations dedicated to promoting research in ataxia including: AtaxiaUK, Ataxia Ireland, and FARA GOFAR Italian Association. The meeting was chaired by Cynthia Gagnon, Bernard Brais and Paola Giunti the National Hospital for Neurology and Neurosurgery in London. It brought together clinicians and researchers from France, Italy, Belgium, England and Germany.
The work of Dr. Gagnon’s team was the starting point for discussion. This helped to establish more concrete goals that will lead to greater international collaboration to accelerate the transition from scientific discovery to clinical trials
December 26, 2014 – On November 12th and 13th,2014, The Montreal Neurological Institute and Hospital hosted the 3rd International Symposium focusing on advances in understanding ARSACS (Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay) in the larger context of mitochondrial dysfunction in neurodegeneration. This two day symposium, sponsored by the Ataxia of Charlevoix-Saguenay Foundation and CIHR Institute of Genetics New Emerging Team on ARSACS, brought together clinical, ataxia, mitochondrial experts from different countries and drug developers to discuss how to accelerate the discovery of treatments for ARSACS. Several experts in the field shared their knowledge and experience on the subject.See Symposium program.
Short video of the panel discussions on ARSACS at the Café scientifique held in November 2014.Panel discussions
Dr. Peter McPherson, whose research is funded by the Foundation, will be speaking on ARSACS on March 18-21,2014 at the 5th Ataxia Investigators Meeting (AIM) in Las Vegas. This would be part of a session based on the theme of mitochondrial function/dysfunction in ataxia. AIM will be held in conjunction with the 2014 National Ataxia Foundation (NAF) Annual Meeting. Furthermore, the Foundation will be a financial partner with NAF at the AIM.
Drs Roxanne Larivière, Peter McPherson and Bernard Brais attended the biennial meeting of researchers on ataxia organized by the National Ataxia Foundation, which was held in Las Vegas from 18 to 21 March.
Dr. McPherson presented the work of the Ataxia of Charlevoix-Saguenay research team demonstrating a mitochondrial contribution to the disease. His presentation was highly rated and several questions were asked by the audience.
Roxanne Larivière presented a more detailed analysis of the latest results of the ataxia of Charlevoix-Saguenay KO mice. This generated lively discussions with other researchers with mouse models of other forms of ataxia.
Some of these discussions will lead to the sharing of these results to try to better understand the cellular cause of the disease. This dual presentation of the work of the Ataxia of Charlevoix-Saguenay research team should be stressed given that this meeting is always more focused on the dominant ataxias rather than the recessive ataxias such as ARSACS . We see an opening on the part of the organization and the group of researchers responsible for this meeting to include more work on recessive ataxias at their future meetings. The Ataxia of Charlevoix-Saguenay Foundation has been recognized as a funding organisation for this meeting and was warmly thanked several times during this three days and a half conference.
ARSACS was presented by several groups from different countries at the SPATAX conference in Paris last June. The Foundation hopes that these contacts will develop a truly international research network on ataxia of Charlevoix-Saguenay to accelerate the discovery of treatments. Summary
First poster in coming to the conference meeting area in Dresden, Germany was on ARSACS. Interesting research results – particularly to clinicians interested in the phenotypic heterogeneity aspects of ARSACS- published in the Orphanet Journal of Rare Diseases.
Olivier Audet, a student in experimental medicine, develops a physical training program for ARSACS patients. See article in the Quotidien.