SIMPATHIC Consortium receives grant from European Commission The SIMPATHIC Consortium, led by the Dutch Radboud University Medical Center and Amsterdam University Medical Centers, has developed a new approach to expedite […]
8.8 million euros for accelerated drug repurposing for rare neurological disorders Read More »
Larimar Therapeutics is a biotechnology company, developing a treatment for Friedreich’s ataxia (FA) called CTI-1601. CTI-1601 replaces frataxin, which is the protein that is reduced in FA. Larimar Therapeutics recently
Larimar Therapeutics – FA trial update Read More »
A recent study led by a group of researchers in Portugal tested the effect of trehalose on an animal model of SCA3.
Trehalose in SCA3 Read More »
The optimal clinical pathway sets out what good treatment, care and support looks like for people with neurological conditions, from those experiencing the first symptoms, to those that have lived
Optimal clinical pathway for people in England with rare neurological conditions Read More »
Article written by Dr Silvia Prades – DRPLA Research Manager On February 22nd, I organised a meet up for families affected by DRPLA who are based in Wales. I travelled
Successful meet up in Cardiff with DRPLA families Read More »
Professor Anja Lowit (University of Strathclyde) and team have published positive results from their study of a new approach to speech therapy, called ClearSpeechTogether. In this Ataxia UK-funded project, people
Positive results from Ataxia UK-funded speech therapy project Read More »
Researchers in Canada have been studying a rehabilitation programme for a type of ataxia called ARSACS. The aim of their study was to see whether a rehabilitation programme could improve
Exploratory study – ARSACS exercise programme Read More »
DRPLA Research Manager, Dr Silvia Prades, interviews Dr Hector Garcia-Moreno and Ola Volhin about the DRPLA Natural History and Biomarkers Study. Ataxia UK and CureDRPLA are coordinating this study and
Biohaven Pharmaceuticals are working with Engage Health on this research project to learn more from families impacted by SCA types 1, 2, 3, or 6 regarding the burden and impact
Research project – understanding the spectrum of SCA1, SCA2, SCA3 & SCA6 Read More »
Many people with ataxia do not have a specific genetic diagnosis and the cause of their ataxia is unknown. Two papers have been published which have identified a genetic mutation
New genetic cause of late-onset ataxia discovered Read More »
Exciting research from two ground-breaking studies shows the power of wearable technology and artificial intelligence in monitoring movement disorders, including Friedreich’s ataxia (FA) Researchers have used a wearable tool to
Wearable technology for Friedreich’s ataxia Read More »
The 100,000 Genomes Project, launched in 2013, aimed to sequence 100,000 genomes from people with rare conditions, such as ataxia, or cancer. Sequencing the whole genome of people with rare
Did you take part in the 100,000 Genomes Project?  Read More »
New FREE eLearning course aims to improve understanding of health research processes The European Federation of Neurological Associations (EFNA) has launched a new eLearning course on the theme of research,
FREE course to improve understanding of health research processes Read More »
Design Therapeutics have announced positive data from the first part of their Phase I clinical trial of DT-216. They found that treatment with DT-216 increased frataxin mRNA. Frataxin mRNA is
Design Therapeutics announce positive data from Friedreich’s ataxia trial Read More »
ARSACS is a rare inherited ataxia caused by mutations in a gene called the SACS gene, which is responsible for producing the sacsin protein. In people with ARSACS, the sacsin
Understanding the cause of ARSACS Read More »
Rare neurological conditions, such as ataxia, often cause problems with balance and coordination, which can limit physical activity. Interventions aimed at improving levels of physical activity are often recommended, for
Measuring physical activity in trials Read More »
The Association of Medical Research Charities (AMRC), of which Ataxia UK is a member, created an animation describing the fundamental role that charities play in research in the UK. Charities
Making research happen Read More »
The EFACTS registry (European Friedreich’s Ataxia Consortium for Translational Studies) collects clinical information from people with Friedreich’s ataxia (FA) across Europe, including at the London Ataxia Centre. Ataxia UK provided
Agreement creates the largest worldwide database for Friedreich’s ataxia Read More »
Last year, we publicised two surveys from the British Paediatric Neurology Association (BPNA) and the James Lind Alliance (JLA). The aim of these surveys was to identify research priorities for
Top Ten UK research priorities for interventions in childhood neurological conditions Read More »
This year saw the International Congress for Ataxia Research (ICAR) held in Dallas, Texas, from 1st – 4th November 2022. The outcome of the research presentations will be reported by
Reflections from ICAR by Ataxia UK Trustee Carol Read More »
Between November 1st – 4th 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). This conference
International Congress for Ataxia Research 2022 Read More »
Ataxia UK and CureDRPLA are coordinating the DRPLA Natural History and Biomarker Study for this very rare form of ataxia. The funding for the study is provided by CureDRPLA. This
The DRPLA Natural History and Biomarkers Study is now recruiting participants Read More »
A study led by researchers at the London Ataxia Centre, in collaboration with UC Davis California and Brunel University London, has shown that a combination of resveratrol and a multiple
Drug combination shows positive effect in models of FA Read More »
Researchers from The German Centre for Neurodegenerative Diseases (DZNE) in Tübingen, and the ESMI Consortium, have published a study looking at the potential for gait measurements to quantify progression of
Gait measurements as a potential biomarker for SCA3 Read More »
PROSPAX (PROgression chart of SPAstic ataXias) and TREAT-ARCA are two global projects, aimed at advancing research into specific ataxias (ARSACS and SPG7 for PROSPAX, and ARSACS and COQ8A-ataxia for TREAT-ARCA).
PROSPAX and TREAT-ARCA project updates Read More »
The research that Ataxia UK funds has a real impact on the world of ataxia research, and our understanding of all ataxias. Every year we ask Ataxia UK-funded researchers to
Research Impact Report 2022 Read More »
Dr Hector Garcia-Moreno is a Neurologist and Clinical Research Fellow working at the London Ataxia Centre, in the team led by Professor Paola Giunti. Dr Garcia-Moreno is involved in the
Identification of SCA3 biomarkers – an interview with Dr Hector Garcia-Moreno Read More »
On May 11th, CureDRPLA hosted the first-ever conference on Dentatorubral-pallidoluysian atrophy (DRPLA) research, in Boston (USA). Ataxia UK has a collaborative relationship with CureDRPLA and we are working together to
2022 CureDRPLA Research Conference Read More »
Biogen announce new clinical trial for SCA3  Biogen have announced that they are starting a Phase I clinical trial for their Spinocerebellar Ataxia Type 3 (SCA3) treatment BIIB132. A Phase
Biogen announce new clinical trial for SCA3  Read More »
LEXEO Therapeutics is a gene therapy company, developing treatments for a number of conditions including cardiomyopathy associated with FA. In February 2022, LEXEO Therapeutics announced that the FDA had cleared
LEXEO Therapeutics announce plans for clinical trial Read More »
