Friedreich's Ataxia Insights

Gene Therapy LX2006 Improves FA Heart Function

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Latest Research

Saha et al. (2025) are exploring the use of predictive machine learning and multimodal data to develop highly sensitive biomarkers for tracking disease progression in Friedreich Ataxia. This involves using measures like the Friedreich Ataxia Rating Scale and the Scale for the Assessment and Rating of Ataxia (SARA) to predict how the disease progresses over time.

The development of these biomarkers could significantly improve our understanding of how Friedreich Ataxia progresses and help in creating more personalized treatment plans. By using machine learning, researchers aim to enhance the accuracy of predicting disease progression, which could lead to better management and care for those affected. This approach highlights the potential for advanced data analysis techniques to improve our understanding and management of complex neurological conditions.

Clinical Trials

This is a list of upcoming or ongoing clinical trials that are actively recruiting and have been listed or updated in the last two weeks:

Community News

Ataxie Ataxia CanadaAtaxie Ataxia CanadaApr 07, 2025

Quelle victoire éclatante!

Un immense bravo à Sinem Kara,

grande gagnante de Big Brother Célébrités 2025!

Son parcours dans la maison a été marquant ! "Stratégie, Authenticité et Courage. Elle a su jouer avec intelligence, sans jamais trahir ses valeurs ... une gagnante inspirante à tous les niveaux.

Mais ce qui nous touche droit au cœur, c’est qu’elle a choisi de jouer pour La Fondation Ataxie Canada. Merci Sinem d’avoir mis en lumière notre cause, de nous avoir représentés avec autant de cœur et de dignité.

Grâce à toi, des milliers de personnes ont entendu parler de l’ataxie.

Et pour ça, on te dit : MERCI, championne!

Ataxie Ataxia Canada Post
Cure FACure FAApr 01, 2025

Last week, FARA co-founder, Ron Bartek, and FA community members, Loren & Kat Hood and Claire, Catie, & Maureen Juip, attended the Congressional Forum on “Cures in Crisis” to advocate for protecting NIH funding. Former NIH Director, Dr. Monica Bertagnolli, shared the importance of NIH-supported research not only for the development of lifesaving medicines but also as a significant contributor to the nation’s economy. The testimony from Dr. Bertagnolli and others will help to document the impact of cuts to NIH and provide information with which to continue advocacy efforts.

Cure FA Post
Ataxia UKAtaxia UKApr 02, 2025

Well done to Charlotte Huggett for completing the Mad Dog 10K and raising an amazing £420 (inc. GA)!

Thank you Charlotte! Your support is much appreciated.

Upcoming Events

APR
09
Learning and connection weekendIn Person National Ataxia Foundation
AUG
16
Disability sports challengeIn Person Ataxia UK • London, United Kingdom
SEP
07
Half marathon for ataxiaIn Person Ataxia UK • London, United Kingdom