There are many different types of ataxia, with numerous causes. For example, ataxia can be genetic, occur due to an autoimmune response (e.g. gluten ataxia) or when we do not […]
An update on genetic testing in ataxia Read More »
Principal Researchers: Dr Ricardo Parolin Schnekenberg, Prof Joanne Ng, Prof Selina Wray and Prof Francesco Muntoni, University College London (UK) Scientific summary: Cerebellar ataxias are genetically heterogeneous and clinically
In an Ataxia UK funded project, Dr Maria Cairney and Prof Anja Lowit at the University of Strathclyde are developing audio messages to support people with ataxia whilst making phone
Developing audio messages to help those with ataxia when making calls Read More »
The team at the Sheffield Ataxia Centre has recently published a paper in the Journal of Neurology. To read the paper please click here. The paper details the Sheffield Ataxia Centre experience and gives some support to the potential use of 3,4-diaminopyridine as a therapy to alleviate symptoms
The Sheffield Ataxia Centre experience on the use of 3,4-diaminopyridine in SCA27B Read More »
IntraBio is a biopharmaceutical company focused on developing treatments for progressive neurological conditions. This page provides updates on their levacetylleucine programme.  Levacetylleucine is a chemically modified version of the amino
IntraBio and levacetylleucine (AQNEURSA) updates Read More »
Spinocerebellar ataxias (SCAs) are a group of rare, progressive hereditary genetic disorders that affects the cerebellum, brain stem and spinal cord. Currently, more than 30 types of SCAs have been identified. SCAs are caused by genetic mutations, which lead to faulty
VICO Therapeutics Clinical Trial updates Read More »
In 2021, Ataxia UK co-funded a research project with the National Ataxia Foundation, ‘Assessment of ataxia severity under real-life conditions with SARAhome: A multicenter study in spinocerebellar ataxia type 3 (SCA3)’. This project was led by Dr
New paper published on the SARAhome scale to remotely assess ataxia symptoms in SCA3 Read More »
In 2022, Ataxia UK awarded funding to Dr Francesca Salvatori at the University of Ferrera in Italy, for a project focused on SCA1. Previous work SCA1 is caused by the production of
Towards a personalised treatment for SCA1 Read More »
Spinocerebellar ataxia type-3 (SCA3) is one of the most common types of SCA worldwide, and is characterised by progressive decline in daily function and quality of life. Whilst cerebellar ataxia
This study, based at the Institute of Neurology, University College London, is led by Neuroscientist Dr Tim West, and funded by the Royal Academy of Engineering and the Rosetrees Trust.
A new project studying neurostimulation in ataxia Read More »
 On October 27th-28th 2025, representatives from Ataxia UK attended the first Clinical Trials in Ataxia (CTAX) conference in Amsterdam. CTAX was organised by Ataxia UK, the National Ataxia Foundation
Reflections on the 2025 Clinical Trials in Ataxias Conference Read More »
The Human Fertilisation and Embryology Authority (HFEA), the UK’s independent regulator of fertility treatment and research using human embryos, has licensed Pre-implantation Genetic Testing (PGT) to diagnose a rare form of
Pre-implantation genetic testing approved to diagnose SCAN3 Read More »
In September 2024 Biohaven announced positive results from their study of troriluzole to treat SCA 1, 2, 3, 6, 7, 8 and 10. Following these results they submitted a new
FDA does not approve new drug application for troriluzole for spinocerebellar ataxias Read More »
On October 28th-29th 2025, Euro-ataxia hosted the International Ataxia Patient Conference in Amsterdam. This two-day event was attended by representatives from 18 ataxia patient organisations from Europe and North America.
Reflections on the 2025 Euro-ataxia conference Read More »
As part of the Ataxia UK 2025 virtual annual conference, Emma Foster, Clinical Nurse Specialist at the Sheffield Ataxia Centre (pictured to the left) gave a talk on managing sleep
Managing sleep and fatigue symptoms in ataxias Read More »
The pharmaceutical company Intrabio, who developed the recently FDA-approved drug AQNEURSA for people with Niemann-Pick Disease Type C, has announced their plans to begin a phase III trial of the
Intrabio to conduct phase III trial in SCA6 and Episodic Ataxia Type-2 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 2025 Read More »
The pharmaceutical company Arrowhead Pharmaceuticals has begun recruitment for their phase 1 randomised placebo-controlled trial of ARO-ATXN2 in adults with SCA2. The programme is a partnership with the pharmaceutical company
Arrowhead Pharmaceuticals starts recruitment for SCA2 trial Read More »
On 7th and 8th May, Ataxia UK’s Research Communications Officer, Scarlett Parr-Reid, attended Beacon for Rare Diseases and Remedi4All’s second International Drug Repurposing Conference (IDR25), held in Amsterdam.  Drug repurposing
Reflections from the International Drug Repurposing Conference 2025 Read More »
In March, Biohaven shared that they have taken the decision to withdraw their new drug application to the European Medicines Agency (EMA) for Troriluzole to treat adults with all Spinocerebellar
Biohaven withdraws Troriluzole application to EMA for Spinocerebellar ataxias Read More »
A study led by Dr Sarah Milne at the Murdoch Children’s Research Institute, Australia, has recently been published in the journal ANNALS of Neurology. The study looked at the impact
On Wednesday 5th February, Ataxia UK hosted a webinar and Q&A as part of Wellbeing Week, a week from 3rd – 7th February dedicated to providing support and information to
On February 6th, the US not-for-profit biotechnology company Cure Rare Disease announced that they have been awarded 5.69 million dollars in funding from the Californian Institute of Regenerative Medicine (CIRM)
Cure Rare Disease receives funding for SCA3 gene therapy trial Read More »
Dr. Alanna Watt is an Associate Professor in the department of biology at McGill University, Canada, and has been running the Watt Lab since 2011. The Watt Lab focuses on
In this study, researchers at the University of Southampton looked at the impact of ataxia symptoms on self-reported mental wellbeing in adults in the UK. They compared findings, collected from
Paper published on the impacts of ataxia symptoms on mental health Read More »
Euro-ataxia, of which Ataxia UK is an active member, is the federation of 22 European ataxia patient organisations. The 2024 Euro-ataxia conference took place in London on 15th-16th November, organised
Ataxia patient organisations united at the 2024 Euro-ataxia annual conference Read More »
The International Congress for Ataxia Research (ICAR) 2024 took place in London from 12th – 15th November. It was organised by Ataxia UK, the National Ataxia Foundation, the Friedreich’s Ataxia
Highlights of the International Congress for Ataxia Research 2024 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 2024 Read More »
Recently, our research intern Scarlett Parr-Reid sat down with Lucie Hogger, Speech and Language Therapist at the London Ataxia Centre to talk about the speech and language therapy services offered
On 25th September 2024, the pharmaceutical company Intrabio announced that the FDA in the US has approved their small molecule drug Levacetylleucine for the treatment of Niemann-Pick Disease Type C
