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The word "ataxia", comes from the Greek word, " a taxis" meaning "without order or incoordination". The word ataxia means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. Ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system.
Friedreich’s Ataxia Research Collaboration AnnouncedFriedreich’s Ataxia Research Collaboration Announced. Medical Sciences Division, University of Oxford, 30 July 2015.A new collaborative drug discovery project in Friedreich’s Ataxia (FA) between…Continue
The National Ataxia Foundation urge people diagnosed with Ataxia to participate in research by registering with CoRDS ( Coordination of Rare Diseases).Please see - sanfordresearch.org/cords/cordsregistryform for more information.Continue
According to the National Ataxia Foundation website, there's a trial being conducted at the moment.This is at the University of South Florida, Morsani Centre for Advance Healthcare, Tampa, Florida 33612They are conducting an open-label trial of…Continue
I wrote this to try and help friends and family understand about how the condition affects us. It has been posted in the neurological e-journal ACNR and on the AUK website.AtaxiaYou'd probably blame it on the drinkThe ﬁrst time that you see it,But,…Continue
We just received the results of the DNA test of my two year old son and it found he has a mitochondrial mutation. Does anyone else have ataxia due to this? My world has just been flipped upside down. I'm looking for any ray of light as the more…Continue
my neuro is changing my meds. awhile ago i read on this site about meds that are helping a woman whose name i didn't get and i can't find her email. i have sca2 i shake and i'm dizzy. if anyone is on helpful meds please let me knowthank youLorraineContinue
Every day depression gets stronger and stronger watching Nena get weaker for a long time we could hide things but I'm terrified of what will happen In her first year of high school next month I'm terrified of her giving up and going to assistive…Continue
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Rare Disease UK is the national alliance for people with rare diseases and all who support them. Members include individual patients and family members, clinicians, health professionals, researchers and industry. Rare Disease UK is campaigning for the development and implementation of a national plan to facilitate research and improve access to services and support for people affected by rare diseases in the UK.
Ben’s Friends is elated to have such a strong partner in its campaign to provide support to every rare disease patient in the UK.
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