Ataxia: my poem
Read this expressive poem about ataxia, and how it affects Linda’s everyday life.
AMRC Impact Report
The AMRC Impact Report highlights the concrete ways that medical research charities make a difference to people and society through the research they fund
AMRC Impact Report Read More »
New initiative for rare diseases launched by Finnish pharmaceutical company
The ‘New Modalities Ecosystem’, launched in 2018 by the Finnish pharmaceutical company Orion, aims to exploit Finnish expertise to deliver new treatments and technologies for rare diseases.
New initiative for rare diseases launched by Finnish pharmaceutical company Read More »
EFACTS reports most common ‘non-ataxia’ symptoms in FA
The ongoing European Friedreich’s Ataxia Consortium for Translational Studies (EFACTS) study, part-funded by Ataxia UK has released a report evaluating the clinical variability in Friedreich’s ataxia (FA) symptoms.
EFACTS reports most common ‘non-ataxia’ symptoms in FA Read More »
Effects of physiotherapy in patients with spinocerebellar ataxia type 7
A recent study investigating the effect of investigating the effect of physiotherapy on patients with spinocerebellar ataxia type 7 (SCA7) has found that it to significantly improve symptoms.
Effects of physiotherapy in patients with spinocerebellar ataxia type 7 Read More »
Euro-ataxia annual meeting
Ataxia UK’s Head of Research Julie Greenfield reports on the 2018 Euro-ataxia annual conference held in Frankfurt.
Euro-ataxia annual meeting Read More »
Minoryx therapeutics announces new trial in Friedreich’s ataxia in a few European countries
Ataxia UK has been talking with Minoryx Therapeutics, a company focusing on developing new drugs for rare conditions, and we are delighted with this new trial being announced.
Friedreich’s ataxia may cause greater susceptibility to skin damage by UVA rays
Experiments in the laboratory using skin cells taken from people with Friedreich’s ataxia have shown that these cells may be more susceptible to damage caused by certain sun rays.
Friedreich’s ataxia may cause greater susceptibility to skin damage by UVA rays Read More »
Ataxia UK’s Annual Spring Raffle
Take part and have the chance to win £200!
Ataxia UK’s Annual Spring Raffle Read More »
Your voice: your message
Ensuring your voice is at the forefront of communications about ataxia
Your voice: your message Read More »
Ataxia UK medical guidelines published in peer-reviewed journal
We are delighted that on 20 February 2019 the Ataxia UK Medical Guidelines were published in the Orphanet Journal of Rare Diseases.
Ataxia UK medical guidelines published in peer-reviewed journal Read More »
Non-invasive eye exam found to predict disease severity in Friedreich’s ataxia
A study has found that a rapid, non-invasive eye exam could potentially be used as a tool for assessing Friedreich’s ataxia patients and as a biomarker in clinical trials.
Non-invasive eye exam found to predict disease severity in Friedreich’s ataxia Read More »
Positive results announced for potential FA treatment
Pharmaceutical company, Reata, has announced new preclinical data that supports the potential use of omaveloxolone in Friedreich’s ataxia.
Positive results announced for potential FA treatment Read More »
Raising awareness and understanding of ataxia among healthcare professionals
Ataxia UK attended conferences in Birmingham and St Asaph to and give talks about ataxia to health and social care professionals.
Raising awareness and understanding of ataxia among healthcare professionals Read More »
FDA oprphan drug designation for spinocerebellar ataxia
Biopharmaceutical company, IntraBio, has received an Orphan Drug Designation from the US Food and Drug Administration (FDA) for its lead compound (IB1000) for the treatment of spinocerebellar ataxias (SCA).
FDA oprphan drug designation for spinocerebellar ataxia Read More »
New options for targeting gene mutation in FA described in nucleic acid therapeutics
Studies have shown that the frataxin gene may be activated by a wide variety of synthetic antisense oligonucleotides
New options for targeting gene mutation in FA described in nucleic acid therapeutics Read More »
Government commits to align as closely as possible with EU rules on clinical trials following Brexit
The UK government has committed to ensuring the UK is as closely aligned as possible with the new EU Clinical Trials Regulation (CTR).
GoFAR reinforces partnership with Powell Gene Therapy Center at University of Florida (UF) to develop a gene therapy for Friedreich’s ataxia
Researchers at the University of Florida have been granted $450,000 by Italian patient advocacy group GoFAR towards a gene therapy project for Friedreich’s ataxia (FA).
New method for diagnosing ARSACS discovered at Specialist Ataxia Centre in London
An imaging technique called Optical Coherence Tomography (OCT) may help with early diagnosis of Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).
New method for diagnosing ARSACS discovered at Specialist Ataxia Centre in London Read More »
Hope for gene therapy for Friedreich’s ataxia
This week results were published showing the effects of an AAV (adeno-associated virus) gene therapy in a new mouse model of Friedreich’s ataxia (FA).
Hope for gene therapy for Friedreich’s ataxia Read More »
Final draft of National Genomic Test Directory includes hereditary ataxia
NHS England has included hereditary ataxia in the final draft of the National Genomic Test Directory for rare and inherited disorders and cancer
Final draft of National Genomic Test Directory includes hereditary ataxia Read More »
Results presented from patient communications survey
The results of the patient communications survey conducted at the 2018 Ataxia UK conference were presented in London by Ataxia UK partners Costello Medical.
Results presented from patient communications survey Read More »
Investigational therapy, EPI-743, shows promise in Phase 2 clinical trial for Friedreich’s ataxia
Results from a phase 2 clinical trial suggest that a new therapy may improve neurological function and prevent disease progression relative to the natural course of Friedreich’s ataxia (FA).
Interview with PhD student and ataxia researcher Wayne Yau
We interview PhD student Wayne Yau about life as an ataxia researcher working on an Ataxia UK funded investigation on the role of genetic DNA repair mechanisms in a range of ataxias.
Interview with PhD student and ataxia researcher Wayne Yau Read More »
International Ataxia Research Conference (IARC) 2019 – Save the date!
Ataxia UK, GoFAR, FARA US and FARA Australia are pleased to announce the date of 3rd International Ataxia Research Conference.
International Ataxia Research Conference (IARC) 2019 – Save the date! Read More »
Study discovers 3 potential blood based biomarkers for FA
Results from a study conducted at the London Ataxia Centre have shown that 3 proteins which may represent new biomarkers in Friedreich’s ataxia (FA).
Study discovers 3 potential blood based biomarkers for FA Read More »
AMRC releases annual research expenditure statistics
The AMRC has released their expenditure statistics for 2018.
AMRC releases annual research expenditure statistics Read More »
Glut 1 deficiency syndrome trial announces negative results
A potential therapy for Glucose transporter 1 deficiency syndrome (Glut1 DS) has produced negative results in phase 3 of its clinical trial.
Glut 1 deficiency syndrome trial announces negative results Read More »
New EU Orphan drug designation for Freidreich’s ataxia
Omaveloxolone has recently been given an Orphan drug designation for Friedreich’s ataxia the European Medicines Agency.
New EU Orphan drug designation for Freidreich’s ataxia Read More »
HIV treatment identified as potential future therapy for FA
Study finds anti-viral drug leads to decrease in frataxin levels and may be a potential future candidate for treating Friedreich’s ataxia (FA).
HIV treatment identified as potential future therapy for FA Read More »