Scarlett Parr-Reid

New paper published on the feasibility and validity of the Goal Attainment Scale to measure treatment effectiveness in people with SCA3

Leave a Comment / Cerebellar ataxia, Research /

Researchers Prof Bart van de Warrenburg, Dr Roderick Maas and Kristofoor Leeuwenberg at Radboud University Medical Center in the Netherlands have recently published a paper in the journal Cerebellum on their work exploring the feasibility of the Goal Attainment Scale (GAS) in Spinocerebellar Ataxia Type-3 (SCA3), as part of the SIMPATHIC research project. The SIMPATHIC […]

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Reflections on the 2025 Euro-ataxia conference

Leave a Comment / ARSACS, Cerebellar ataxia, Event, Friedreich's ataxia, PROSPAX, Research, SPG-7 /

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. We were also joined by representatives from six pharmaceutical companies, and a number of ataxia researchers.  We heard updates on clinical programmes on a range

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Lexeo shares positive data in trial of LX2006 for FA cardiomyopathy

Leave a Comment / Friedreich's ataxia, Research /

The pharmaceutical company Lexeo Therapeutics has announced positive updates from their phase I/II trial of the gene therapy LX2006 to treat cardiomyopathy in Friedreich’s ataxia (FA).   Interim data has shown sustained or deepening improvements in most participants across both cardiac and neurological measures of FA. This includes clinically meaningful improvement in the modified Friedreich Ataxia

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Reflections from the International Drug Repurposing Conference 2025

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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 involves finding new therapeutic uses for drugs that are already approved for use in other conditions. One example of this which was showcased at IDR25

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Paper published comparing specialist ataxia centres with non-specialist services in terms of care, organisation, health services resource utilisation, and costs in Germany

Leave a Comment / ARSACS, Cerebellar ataxia, Friedreich's ataxia, Research, SPG-7 /

Ataxia UK has worked closely with researches at the London Ataxia Centre and other experts on a research study assessing the impact of specialist ataxia centres (SACs) in Europe. This was part of the Value of Treatment (VoT) project supported by the European Brain Council, a non-profit organisation which promotes brain research to improve the

Paper published comparing specialist ataxia centres with non-specialist services in terms of care, organisation, health services resource utilisation, and costs in Germany Read More »

PROSPAX Consortium publishes results from their 4-year project on spastic ataxias, with more to come

Leave a Comment / ARSACS, Cerebellar ataxia, PROSPAX, Research, SPG-7 /

About the PROSPAX project The PROSPAX consortium of patient groups, researchers and clinicians across Europe and Canada (including the UK), set up the PROSPAX project to study the progression of spastic ataxias over time, in a rigorous and harmonised way – from the clinical to the molecular level. This has included clinical, imaging, digital-motor and

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Highlights of the International Congress for Ataxia Research 2024

Leave a Comment / ARSACS, Cerebellar ataxia, Event, PROSPAX, Research, SPG-7 /

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 Research Alliance, and the Ataxia Global Initiative. This was the biggest ICAR yet, with 600 in-person attendees and 50 attending online from 32 countries, including researchers,

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Ataxia patient organisations united at the 2024 Euro-ataxia annual conference 

Leave a Comment / Cerebellar ataxia, Event, Research /

The 2024 Euro-ataxia conference took place in London on 15th-16th November, organised by Ataxia UK. The conference was a great success; fourteen ataxia patient groups, as well as researchers and pharmaceutical representatives gathered to share best practice in healthcare and research.   Talks included updates from clinical trials, patient group presentations, and panel discussions. On the

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

Leave a Comment / Cerebellar ataxia, Research /

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 were treated with Troriluzole showed a 50 – 70% slowing of disease progression, compared to those with SCA who were untreated over a 3-year study

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

Leave a Comment / ARSACS, Cerebellar ataxia, Friedreich's ataxia, Research, SPG-7 /

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 of the Value of Treatment (VoT) project supported by the European Brain Council, a non-profit organisation which promotes brain research to improve the lives of

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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