Scarlett Parr-Reid - Ataxia UK

Scarlett Parr-Reid

Spastic Ataxia Composite (SPAXCOM): a scale to evaluate disease progression in people with spasticity and ataxia

Current clinical rating scales to measure disease progression in people with spasticity and ataxia are focused solely on either spasticity symptoms (stiffness of muscles leading to involuntary spasms) or ataxia […]

Spastic Ataxia Composite (SPAXCOM): a scale to evaluate disease progression in people with spasticity and ataxia Read More »

PTC Therapeutics announces that the FDA has not approved Vatiquinone to treat FA in adults and children

On 19th August 2025, the pharmaceutical company PTC Therapeutics announced the disappointing news that the US drug regulators the FDA have not approved the drug Vatiquinone to treat adults and

PTC Therapeutics announces that the FDA has not approved Vatiquinone to treat FA in adults and children Read More »

Co-designing audio support messages with and for people with ataxia: a telephone version of the “I’m not drunk” ID card

Upcoming project: Co-designing audio support messages with and for people with ataxia: a telephone version of the “I’m not drunk” ID card  Principal Investigators: Dr Maria Cairney and Prof Anja

Co-designing audio support messages with and for people with ataxia: a telephone version of the “I’m not drunk” ID card Read More »

Subtyping Hereditary Cerebellar Ataxias based on multimodal disease progression patterns Subtyping Hereditary Cerebellar Ataxias based on multimodal disease progression patterns

Upcoming project: Subtyping Hereditary Cerebellar Ataxias based on multimodal disease progression patterns Subtyping Hereditary Cerebellar Ataxias based on multimodal disease progression patterns Principal investigators: Dr Susmita Saha, Prof Nellie Georgiou-Karistianis,

Subtyping Hereditary Cerebellar Ataxias based on multimodal disease progression patterns Subtyping Hereditary Cerebellar Ataxias based on multimodal disease progression patterns Read More »

Investigating The Molecular Mechanisms of SCA2 Using 3D Cerebellar Organoids and Multi-Omics Approaches: A Platform for Advancing Ataxia Research

Upcoming project: Investigating The Molecular Mechanisms of SCA2 Using 3D Cerebellar Organoids and Multi-Omics Approaches: A Platform for Advancing Ataxia Research Principal applicants: Prof Jorgen Erik Nielsen, Senior Researcher Patrick

Investigating The Molecular Mechanisms of SCA2 Using 3D Cerebellar Organoids and Multi-Omics Approaches: A Platform for Advancing Ataxia Research Read More »

Caring for people with progressive ataxia – lived experience of family carers and co-development of support mechanisms

Upcoming Project: Caring for people with progressive ataxia – lived experience of family carers and co-development of support mechanisms   Principal researchers: Prof Anja Lowit and Prof Christopher Graham, Strathclyde

Caring for people with progressive ataxia – lived experience of family carers and co-development of support mechanisms Read More »

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 »

Scroll to Top