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**** Able Radio **** http://www.ableradio.com/
 

 

What is Ataxia?

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.

Forum

Friedreich’s Ataxia Research Collaboration Announced

Started by Alan Thomas in General 4 hours ago. 0 Replies

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

Ataxia & Wheelchair users on Welsh TV

Started by Alan Thomas in General on Tuesday. 0 Replies

The @BBCXRay #xrayHolidaySpecial: http://t.co/TZGUGEthNu via @bbciplayer#travel #Sun #sea & #wheelchairAtaxia Rare DiseaseContinue

Ataxia Patient Research Registry

Started by Beryl Park in News, Research, and Clinical Trials. Last reply by Beryl Park Jul 25. 2 Replies

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

Trial of IVIG

Started by Beryl Park in News, Research, and Clinical Trials Jul 25. 0 Replies

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

Poem about Ataxia

Started by FeelingOurWay in General. Last reply by FeelingOurWay on Saturday. 3 Replies

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

DNA test results are back

Started by Laur22 in General. Last reply by Ozzy yesterday. 3 Replies

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

meds

Started by Lorraine Lerner in General. Last reply by Sharon#3sca Jul 24. 1 Reply

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

Friedrich Ataxia will this be the last summer Nenas mobile

Started by helpsavemynenababy in New Member Check-In. Last reply by Ozzy Jul 24. 4 Replies

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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Ben's Friends Partners with Rare Disease UK

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.           

Latest Activity

Ozzy shared their video on Facebook
2 hours ago

Moderator
Beryl Park left a comment for Ellen
"Hi Ellen, welcome to the group :-) Click on 'groups' on the bar at the top of the page. There are 3 sub groups you could look at: Friedreichs Ataxia - Friens and Family affected by Ataxia. - Parents of Children with Ataxia Also,…"
3 hours ago
scrffycat9 left a comment for Karen Ann
"I would find it really interesting finding out more about your daughter. In the meantime I'll Google Iowa, to find our exactly where it is."
3 hours ago
scrffycat9 left a comment for Karen Ann
"Nearly time. Let me know how it goes. My problem is in theory easier. I have one eye that shuts tight, and the other just goes along for the ride.The trouble is, as I get older, my skin gets drier, and there gets less movement in this eye. All I…"
3 hours ago

Moderator
Alan Thomas posted a discussion

Friedreich’s Ataxia Research Collaboration Announced

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…See More
4 hours ago
Anna liked Kati's discussion Ataxia and Speech
5 hours ago
LifeGoesOn and Tallulah are now friends
13 hours ago

Greeter
Sharon#3sca left a comment for Ellen
"Hi Ellen, welcome to our group!​ There are several ways to communicate here, so just start exploring and get comforable :-) Best wishes, Sharon"
18 hours ago

Top Discussions 

1 Poem about Ataxia

Poem about Ataxia

Posted by FeelingOurWay on July 25, 2015

2 DNA test results are back

DNA test results are back

Posted by Laur22 on July 24, 2015

3 Update to Previous post

Update to Previous post

Posted by Kay on July 21, 2015

4 Second vest try-out was not helpful. Chinese herbs??

Second vest try-out was not helpful. Chinese herbs??

Posted by neta on July 21, 2015

5 Speech app

Speech app

Posted by Dee on July 23, 2015

6 Ataxia Patient Research Registry

Ataxia Patient Research Registry

Posted by Beryl Park on July 25, 2015

 
 
 

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    International Ataxia Awareness Day is September 25 

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