The Foundation is pleased to announce that Dr. Paolo Arrigoni has joined the Foundation’s Board of Directors. With his experience, Dr. Arrigoni will bring an European perspective at the Board.
A new research has shown that a cheap non-invasive test could be used to diagnose ARSACS according to an article published recently in the Brain journal of neurology. See press release from UCL Faculty of Brain Sciences (London) and the complete research article .
“To people with ARSACS, do not to get discouraged, believe in yourself, go ahead even if it takes longer, anything is possible. It is often the mind the first barrier. In addition, I would tell parents to develop their children’autonomy as much as possible with their limitations. It will help them later”.
Letter from Jean François Collard.
The “2017 Diner des Producteurs “event gets media coverage in the February issue of the Montreal Centre Ville magazine. Article
The screening of new molecules at the end of 2017 made it possible to identify other candidate molecules. The list goes on! Already a team from IRIC is investigating whether molecules can get to the brain. The teams of Dr. Brais, Dr. Watts and Dr. McKinney of McGill University are advancing in their validation of molecules on other models. Dr. Schwarz’s team at Harvard is also involved in the validation process.
The Foundation is very pleased to announce that Mrs. Julie E. Duchesne has joined its Board of Directors. Mrs. Duchesne, actuary, FSA, FCIA, Partner, has some 20 years of experience in the field of benefits consulting and team leadership. She is currently Health Business leader for Canada in group insurance practice at Mercer. She has also served on the board of CIFAR (Canadian Pension and Benefits Institute).
The study has developed an algorithm to facilitate and improve the diagnosis of recessive ataxias, including ARSACS. Dr. Gagnon’s research team and Dr. Brais provided data on the functional abilities of people with ARSACS. This was made possible thanks to the support of the Foundation via Emerging team, the data from the first phase of this important project. It should be noted that this prestigious medical journal lists only a limited number of people among the authors. As a result, the names Dr. Gagnon and Dr. Brais are included in the RADIAL Working Group. “A Recessive Ataxia Diagnosis Algorithm for the Next Generation Sequencing Era”
Congratulations Sarah and thank you to all the donors for their contribution to the cause.
Sarah Blackburn’s initiative raised $3,400 for ARSACS by creating awareness among her community for the need to support ARSACS research.
The Italian Ministry of Health will fund the project Insight into new therapeutic preclinical strategies in Autosomal Recessive Spastic
Ataxia of Charlevoix-Saguenay type presented by Gianni Ciofani, Smart Bio-Interfaces, Istituto Italiano di Tecnologia (IIT), Pontedera (PI)
Francesca Maltecca, Neurogenomics Unit, Ospedale San Raffaele, Milan, Italy and Filippo M. Santorelli, Molecular Medicine, IRCCS Fondazione Stella Maris, Pisa. Congratulations!
Summary of the research project.