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
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
Our research intern, Scarlett Parr-Reid, sits down with Dr. Herrera to discuss his research on spastic ataxia type-8 (SPAX8). Can you share a little about yourself, your background as a
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 »
The biotechnology company Alterity Therapeutics presented data from their lead Friedreich’s ataxia (FA) drug candidate ATH434 at the 2024 US World Orphan Drug Congress. In FA, a genetic change in
Alterity Therapeutics presents data on the potential of ATH434 to treat FA 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 October 26th 2023, the pharmaceutical company Biohaven submitted an application for a new drug approval of Troriluzole to the European Medicines Agency (EMA) for the treatment of Spinocerebellar Ataxia
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 »
The 7th International Symposium on Autosomal Spastic Recessive Ataxia of Charlevoix-Saguenay (ARSACS) was held on 19th-20th October, welcoming 200 people online and in-person, from researchers to clinicians, neurologists, physiotherapists, medical
Reflecting on the 7th International ARSACS Symposium 2023 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 »
On 19th September, Euro-ataxia hosted its first webinar on gene therapy as part of a new series with Ataxia UK. 70 audience members attended live, and 70 watched the recording.
Euro-ataxia hosts first in a series of webinars with Ataxia UK on gene therapy   Read More »
The team at the Sheffield Ataxia Centre, led by Prof Marios Hadjivassiliou, has been investigating whether faulty genes called RFC1 seen in a condition called CANVAS (cerebellar ataxia, neuropathy and
Earlier this year, Ataxia UK awarded a travel grant to Dr David Pellerin at University College London, to attend the 2023 Annual Meeting of the American Academy of Neurology. Supporting
American Academy of Neurology 2023 Read More »
Biohaven is a pharmaceutical company developing Troriluzole as a treatment for SCA3. In May 2023, Biohaven submitted a New Drug Application (NDA) to the US regulators (the FDA), to apply
Biohaven update on Troriluzole programme Read More »
Do you want to learn about what gene therapy is, or what the future of gene therapy research may bring? Euro-ataxia, with support from Ataxia UK, will be hosting an
Gene therapy educational webinar Read More »
Biohaven is a pharmaceutical company with an ataxia research programme. They carried out a clinical trial testing Troriluzole in a number of SCAs. Results of this 48 week trial showed
Biohaven submits NDA to FDA Read More »
