Research News - Ataxia UK

Research News

Ataxia UK and Realise Advocacy host webinar on access to omaveloxolone for adults aged 16 and over with FA in the UK

On Friday 23rd May, Ataxia UK hosted a webinar and Q&A on access to omaveloxolone for adults with Friedreich’s ataxia (FA) in the UK. This webinar was presented in partnership

Ataxia UK and Realise Advocacy host webinar on access to omaveloxolone for adults aged 16 and over with FA in the UK Read More »

Sign our letter to the UK Secretary of State for Health and Social Care requesting interim access to omaveloxolone for FA patients in the UK

We recently shared with the community the disappointing news about that Biogen have withdrawn their application to NICE (the body that makes decisions on reimbursement of medicines in the UK)

Sign our letter to the UK Secretary of State for Health and Social Care requesting interim access to omaveloxolone for FA patients in the UK Read More »

Biogen announces plans to start their global phase 3 trial of Omaveloxolone in children aged 2-15, with sites in the UK

Biogen have shared their plan to initiate their BRAVE study, a global phase 3 trial of Omaveloxolone (SKYCLARYS®) in children aged 2-15 years. The trial will study the effects and

Biogen announces plans to start their global phase 3 trial of Omaveloxolone in children aged 2-15, with sites in the UK Read More »

New study published on goal-directed Rehabilitation vs. Standard Care in those with hereditary Cerebellar ataxia

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

New study published on goal-directed Rehabilitation vs. Standard Care in those with hereditary Cerebellar ataxia Read More »

Lexeo Therapeutics provides updates on their gene therapy programme for Friedreich’s ataxia cardiomyopathy

On March 24th 2025, the pharmaceutical company Lexeo Therapeutics provided a number of updates on their phase 1/2 trial of the gene therapy drug LX2006 for Friedreich’s ataxia (FA) cardiomyopathy. 

Lexeo Therapeutics provides updates on their gene therapy programme for Friedreich’s ataxia cardiomyopathy Read More »

Ataxia UK hosts webinar on managing ataxia symptoms, presented by Dr. Michael Parkinson of the London Ataxia Centre

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

Ataxia UK hosts webinar on managing ataxia symptoms, presented by Dr. Michael Parkinson of the London Ataxia Centre Read More »

Alterity Therapeutics announces positive results from its phase 2 trial of the drug ATH434 in MSA

On January 30th 2025, the pharmaceutical company Alterity Therapeutics announced positive data from their phase 2 placebo-controlled trial in early-stage MSA. MSA is a progressive neurological condition leading to impaired

Alterity Therapeutics announces positive results from its phase 2 trial of the drug ATH434 in MSA Read More »

In Conversation with Dr. Alanna Watt, lead of the Watt Lab at McGill University, Canada, on her research looking at changes in the brain in SCA6

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 Conversation with Dr. Alanna Watt, lead of the Watt Lab at McGill University, Canada, on her research looking at changes in the brain in SCA6 Read More »

Highlights of the International Congress for Ataxia Research 2024

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 »

Intrabio announces FDA approval of their drug Levacetylleucine (Aqneursa) for the treatment of Niemann-Pick Disease Type C

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

Intrabio announces FDA approval of their drug Levacetylleucine (Aqneursa) for the treatment of Niemann-Pick Disease Type C Read More »

Biohaven announces positive results in their study of Troriluzole for Spinocerebellar ataxia (SCA)

On September 23rd, 2024, the pharmaceutical company Biohaven announced positive topline results from their study of the drug Troriluzole to treat SCAs 1,2,3,6,7,8 and 10.    Those with SCA who

Biohaven announces positive results in their study of Troriluzole for Spinocerebellar ataxia (SCA) Read More »

Vico Therapeutics announces positive interim data in their phase 1/2a trial of VO659, which is being tested in people with Huntington’s disease (HD) and spinocerebellar ataxias 1 and 3

On September 13th, the pharmaceutical company Vico Therapeutics announced positive interim phase 1/2a clinical data of VO659 in the treatment of Huntington’s disease. VO659 demonstrated a 28% average reduction in

Vico Therapeutics announces positive interim data in their phase 1/2a trial of VO659, which is being tested in people with Huntington’s disease (HD) and spinocerebellar ataxias 1 and 3 Read More »

Satisfaction is significantly higher in those attending UK specialist ataxia centres compared with those who do not, new paper shows

Ataxia UK has worked closely with the London Ataxia Centre researchers and other experts on a research study assessing the impact of specialist ataxia centres in Europe. This was part

Satisfaction is significantly higher in those attending UK specialist ataxia centres compared with those who do not, new paper shows Read More »

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