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 pharmaceutical company Arrowhead Therapeutics 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 to open UK sites in 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 »
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
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. Â Â Those with SCA who
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
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
Our Research Intern, Scarlett Parr-Reid, sits down with Dr. Federico Herrera (pictured below) for the second part of a two-part interview series, to discuss his team’s research project at the
In conversation with Dr. Federico Herrera part 2 Read More »
Many people with ataxia do not have a specific genetic diagnosis and the cause of their ataxia is unknown. In 2023, two papers were published which identified a genetic mutation
Update on genetic testing for SCA27B Read More »
On 12th July Ataxia UK hosted a webinar on how medicines get approved for use in the UK and how decisions are made on their funding in the NHS. The
Ataxia UK hosts an educational webinar on the UK medicines approval process Read More »
Our research intern, Scarlett Parr-Reid, sits down with Dr Ng to discuss his research into mitochondrial disease and spinocerebellar ataxia type-6 (SCA6). Tell me a bit about yourself and your
The PROSPAX Consortium has recently published two new research papers as part of the PROSPAX project, an international project that aims to better understand how spastic ataxias progress over time
PROSPAX Consortium publishes two new research papers Read More »
Rachel Higgins (BSc (Hons) MCSP) is a Clinical Specialist Neurological and Vestibular Physiotherapist at The National Hospital for Neurology and Neurosurgery (NHNN). She has worked within the field of neurology
In conversation with London Ataxia Centre Specialist Physiotherapist, Rachel Higgins Read More »
Professor Paola Giunti is an award-winning Consultant Neurologist. She has specialised in ataxias for over 30 years, and set up the London Ataxia Centre in 2005. At the London Ataxia
The Human Fertilisation and Embryology Authority (HFEA) is the UK’s independent regulator of fertility treatment and research using human embryos. They have licensed Pre-implantation Genetic Testing (PGT) to diagnose a
Pre-implantation Genetic Testing licensed in UK for SCAR17 Read More »
Suzanne has worked as a neurology specialist nurse for 19 years, supporting people with a range of long-term neurological conditions. She has recently completed an MSc in Advanced Clinical Practice,
In conversation with London Ataxia Centre Specialist Ataxia Nurse, Suzanne Booth Read More »
A multinational research team led by University of Utah researchers has identified the gene that causes a rare type of late-onset ataxia called Spinocerebellar Ataxia Type-4 (SCA4). This discovery paves the
Study identifies gene that causes SCA4 Read More »
Ataxia UK 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
Quality of care is higher in Specialist Ataxia Centres, European study finds Read More »
On 1st December 2023, the pharmaceutical company Seelos Therapeutics announced they had stopped their phase 2/3 programme known as STRIDES, which had been investigating a new drug for Spinocerebellar Ataxia
Seelos Therapeutics has stopped their phase 2/3 trial of Trehalose for SCA3 Read More »
Research by Prof Anja Lowit and her team at Strathclyde University, Glasgow, studying the effectiveness of a new type of speech therapy for some progressive ataxias, has shown some promising
On Friday 20th and Saturday 21st October 2023, Ataxia UK held their first ever hybrid in-person and virtual annual conference for families affected by ataxia. The conference, which took place
Reflections on the Ataxia UK Annual Conference 2023 Read More »
