International Ataxia Research Conference (IARC) 2019 – Save the date!
Ataxia UK, GoFAR, FARA US and FARA Australia are pleased to announce the next International Ataxia Research Conference to be held on 14-16 November in Washington, DC.
This will be the 3rd International Ataxia Research Conference where the latest research in Friedreich’s Ataxia, SCAs and other progressive ataxias will be presented and discussed.
Posted on 28/08/2018
Investigational therapy, EPI-743, shows promise in Phase 2 clinical trial for Friedreich’s ataxia
Results from a Phase 2 clinical trial investigating EPI-743, a therapy developed by BioElectron, have shown that its long term usage may improve neurological function and prevent disease progression relative to the natural course of Friedreich’s ataxia (FA).
EPI-743 is a potent antioxidant, which can regulate the response of key enzymes involved in the processes of oxidative stress, inflammation and cell death. This randomised, placebo-controlled Phase 2 trial tested the safety and efficacy of the drug on 63 adults with genetically confirmed FA. The therapy was found to be safe and well-tolerated with no reported serious adverse events or toxicity related to treatment.
Results initially failed to reveal any significant differences between those who took EPI-743 or placebo in any of the measured clinical parameters. As a result, post-hoc analysis, including only patients who had shown improvement of at least five points per year on the FARS-Neuro (a threshold indicative of the natural course of disease progression) was performed. This demonstrated that significantly more patients on EPI-743 experienced an improvement of three points or more than placebo, and significantly fewer experienced a three-point decrease.
Further studies are needed to evaluate the long-term impact of EPI-743. View the research paper here.
Posted 24/08/2018
National Genomic Test Directory
From October 2018 the National Genomic Test Directory will specify which genomic tests are commissioned by the NHS in England, the technology by which they are available, and the patients who will be eligible to access a test. The final draft 2018/2019 National Genomic Test Directory for rare and inherited disorders and cancer can be accessed here. Among the rare and inherited disorders covered are hereditary ataxia with onset during childhood and hereditary ataxia with onset during adulthood.
Posted 24/08/2018
Science and research funds from EU programmes guaranteed even in no-deal scenario
UK researchers have been assured by the British government that any funding they gain through EU programmes, up until the end of 2020, will be guaranteed by the UK government should Brexit negotiations end with no deal being agreed.
This guarantee includes projects covered by Horizon 2020. Any successful bids made by 31st December 2020 will be entitled to their allocated funding in full and will continue to receive funding for their entire duration. British researchers therefore have certainty over future funding and should feel encouraged to continue bidding for competitive EU funds while the UK remains a member.
This decision builds upon previous commitments made by the UK Government in August and October 2016. Read the HM Treasury press release in full here.
Posted 24/08/2018
