Scarlett Parr-Reid - Ataxia UK

Scarlett Parr-Reid

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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 »

Lexeo announces positive results from their SUNRISE-FA trial of LX2006 for FA cardiomyopathy

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

Lexeo announces positive results from their SUNRISE-FA trial of LX2006 for FA cardiomyopathy Read More »

An interview with Netherlands-based PhD researcher Ilse Willemse, on the SPAX app for home monitoring in ARSACS and SPG7 as part of the European PROSPAX project 

The PROSPAX (PROgression chart of SPAstic ataXias) project focuses on ARSACS and SPG7, and is a collaboration between neurologists in several sites across Europe and Canada. The overall aim is to gain

An interview with Netherlands-based PhD researcher Ilse Willemse, on the SPAX app for home monitoring in ARSACS and SPG7 as part of the European PROSPAX project  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 »

The PROSPAX Consortium publishes an infographic on their natural history study of individuals with ARSACS and SPG-7 in Europe

The PROSPAX (PROgression chart of SPAstic ataXias) project is a collaborative effort between neurologists across several sites throughout Europe and Canada. The aim is to better understand how spastic ataxias

The PROSPAX Consortium publishes an infographic on their natural history study of individuals with ARSACS and SPG-7 in Europe 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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