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Friedreich’s ataxia life expectancy

Introduction Living with Friedreich’s Ataxia (FA) demands courage and adaptability. This progressive neurological disorder affects individuals like Sarah Thompson, a...

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What part of the brain is affected by Friedreich’s ataxia?

While F A is relatively rare, it is the most common form of inherited ataxia. It is sometimes confused with...

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What are the speech-related issues in F A?

The main problem is dysarthria, which means a motor speech disorder, not a cognitive speech disorder. Cognition is generally intact...

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Collaborative Clinical Research Network in Friedreich’s Ataxia (CCRN)

On November 5, 2022 By voicesoffa
  • Youtube Videos

The Collaborative Clinical Research Network in Friedreich’s Ataxia (CCRN in FA) is an international network of clinical research centers that

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LX2006

On November 3, 2022 By voicesoffa
  • Youtube Videos

In 2018, Ron Crystal, Professor, and Chairman of the Department of Genetic Medicine Department at Weill Cornell Medicine founded Lexeo

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RT001 (dPUFAs)

On November 2, 2022 By voicesoffa
  • Youtube Videos

dPUFAS – Fatty acids are an essential fuel source for the body, especially the heart and muscles. There are different

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NAD+ and Exercise in FA (ExRx in FA)

On November 1, 2022 By voicesoffa
  • Youtube Videos

There is a critical knowledge gap regarding the best ways to intervene to increase aerobic capacity (VO2max on exercise testing)

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Vatiquinone (PTC-743) 15 LO inhibitor

On October 31, 2022 By voicesoffa
  • Youtube Videos

Vatiquinone (PTC-743) 15 LO inhibitor, is a follow-on or “sister” compound to EPI-A0001, which aims to improve mitochondrial and cellular

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Epicatechin

On October 29, 2022 By voicesoffa
  • Youtube Videos

Epirium Bio is developing compounds (Epicatechin) that promote mitochondrial biogenesis (the making of new mitochondria). They report the discovery of

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Diabetes mellitus and Friedreich´s ataxia in a child: a complicated coexistence

On October 27, 2022 By voicesoffa
  • Youtube Videos

The appearance of motor clumsiness, with running and jumping difficulties in a 6-year-old boy, prompted the genetic study of Friedreich’s

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COVID-19 in patients with Friedreich ataxia (FA)

On October 25, 2022 By voicesoffa
  • Youtube Videos

This study reviews the course and outcomes of COVID-19 in a single-site sub-cohort of a large natural history study to

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2022 rideATAXIA by Kendall Harvey

On October 24, 2022 By voicesoffa
  • Youtube Videos

I officially began my journey with Friedreich’s Ataxia (FA) in 2013. It has been a wild roller coaster full of

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The Subtle Art of Conversing With People Who Have Disabilities
by Kendall Harvey

On October 22, 2022 By voicesoffa
  • Youtube Videos

Tips for talking with people with disabilities First, we don’t always have to talk about my disability, nor do I

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