Partnerships
The Ataxia Charlevoix-Saguenay Foundation is always looking for opportunities to work in partnership with other organizations and pharmaceutical companies to further the understanding of this disease and conduct independent research.
PROSPAX Project
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, a 3 year project launched in September 2020, is a novel collaborative effort between several neurologists across Canada and Europe. This ambitious project aims to study the progression of spastic ataxias over time. It is an unique opportunity for patients to have their voice heard by researchers, to make sure that the questions they are trying to answer are the ones that are important to a person living with the condition. The PROSPAX project will focus on two conditions – ARSACS and SPG7.
Project description.
PROSPAX survey results
Highlights of the 2022 ICAR and AGI conferences
PROSPAX Natural History Study
TREAT-ARCA Project
The Foundation is pleased to represent the ARSACS patients on the research project entitled “Designing a toolbox of paradigmatic treatments for a targeted molecular medicine approach to autosomal-recessive ataxias” and referrred to TREAT-ARCA
The TREAT-ARCA project, which began in June 2021, is a preclinical research project focused on two rare ataxias: Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS) and COQ8A-ataxia (also known as Autosomal Recessive Cerebellar Ataxia type 2 ARCA2). This 3-year project received funding from the EU’s Horizon 2020 research and innovation programme.
The specific objective is the pre-clinical-research to develop effective therapies for rare diseases. It aims at designing and testing new complementary treatment strategies, including both repurposed and newly identified molecules, as well as gene therapies in two exemplary multisystemic flagship ARSACS and COQ8A-ataxia (ARCA2).
In November 2022, Ataxia UK, the National Ataxia Foundation (NAF), and the Friedreich’s Ataxia Research Alliance (FARA) co-hosted the International Congress for Ataxia Research (ICAR) in Dallas, Texas, USA, one of the largest gatherings of ataxia researchers to date. The Ataxia Global Initiative (AGI) conference was held immediately after ICAR 2022. Both conferences included researchers, pharmaceutical companies and patient group representatives.
Critical Path to Therapeutics for the Ataxias consortium project
The Foundation is a member of the Critical Path to Therapeutics for the Ataxias (CPTA) consortium as a patient advocacy group.
The consortium, launched in February 2021, is a public-private partnership focused on optimizing clinical trials for inherited ataxias. It involves the participation of government regulatory and research agencies, academia, patient organizations, and bio-pharmaceutical companies.
C-Path is an independent nonprofit organization created to improve the drug development process.
CPTA Highlights and Achievements March 2024
Catalis Quebec
The Foundation is part of the Catalis partner network as a patient advocacy group representing ARSCAS patients.
Catalis Quebec’s mission is to optimize the clinical research environment in Quebec in order to create an environment that allows an easy access to clinical trials to all patients who wish to participate.