Friedreich's ataxia - Ataxia UK

Friedreich’s ataxia

In conversation with the London Ataxia Centre Speech and Language Therapist, Lucie Hogger

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 […]

In conversation with the London Ataxia Centre Speech and Language Therapist, Lucie Hogger 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 »

Lexeo announces positive results from their phase 1/2 clinical trial programme for FA cardiomyopathy

Lexeo Therapeutics is a pharmaceutical company developing a gene therapy called LX2006 for people with Friedreich’s ataxia (FA) hypertrophic cardiomyopathy (disease of the heart involving stretching, thickening, or stiffening of

Lexeo announces positive results from their phase 1/2 clinical trial programme for FA cardiomyopathy Read More »

Ataxia UK hosts an educational webinar on the UK medicines approval process

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

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Larimar Therapeutics announces progress of the Nomlabofusp (CTI-1601) trial for Friedreich’s ataxia

Following clearance by the US drug regulatory body the Food and Drug Administration (FDA) in July 2023, the pharmaceutical company Larimar Therapeutics has completed full enrolment and dosing of the

Larimar Therapeutics announces progress of the Nomlabofusp (CTI-1601) trial for Friedreich’s ataxia Read More »

Alterity Therapeutics presents data on the potential of ATH434 to treat FA

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 »

Voyager Therapeutics and Neurocrine Biosciences announce selection of a lead gene therapy candidate for their FA program

On 26th February, the biotechnology company Voyager Therapeutics announced that as part of their collaboration with the biopharmaceutical company Neurocrine Biosciences, they have selected a lead development candidate in their

Voyager Therapeutics and Neurocrine Biosciences announce selection of a lead gene therapy candidate for their FA program Read More »

New study shows impacts of FA on daily life, wellbeing, and relationships in those with FA and their caregivers  

Findings from a recent study, ‘Health-related quality of life in Friedreich Ataxia: A study of impacts on patients and caregivers’, were presented at the International Society for Pharmacoeconomics and Outcomes

New study shows impacts of FA on daily life, wellbeing, and relationships in those with FA and their caregivers   Read More »

Paper published on study of effectiveness of omaveloxolone for Friedreich’s ataxia using natural history study data

The natural history of Friedreich’s ataxia (FA) has been studied as part of a project called the Friedreich’s ataxia Clinical Outcome Measures Study (FACOMS). Natural history studies track the course

Paper published on study of effectiveness of omaveloxolone for Friedreich’s ataxia using natural history study data Read More »

Reflections on the Ataxia UK Annual Conference 2023

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 »

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