Living With Ataxia - Online Support Group


If your family has been affected by Ataxia, consider Living With Ataxia Support Network your second home.


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Ben's Friends Fundraiser

Hi Past & Present Ben's Friends Supporters! 
We really need your help. Our annual Ben's Friends fundraiser is way below goal. So far we are at $14k with many generous donations. But at the very least we need to be at $25k, and ideally at $35k or above. 
We're probably the most efficient non profit in the world, helping 125,000 patients per month with a budget of $3k per month. But even we can't survive on $14k. 

Please donate at our super easy Donation Page at Ben's Friends . A $5 donation will make a big donation. Everything is tax deductible!

We realize most members aren't in a position to donate. Those members can help by spreading the word about the fundraiser on the communities and on Facebook. 

We need your help to keep Ben's Friends alive and going strong!
We really need your help! Please donate, even if it's $5, that will really help.

(Co-Founder of Ben's Friend)

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.


Head, Eye, Nose Pain 2yr old boy

Started by Laur22 in General. Last reply by John "JC" Colyer 1 hour ago. 9 Replies

I'm looking for some guidance from all of you.  My 2 yr old son has Episodic Ataxia.  We had a DNA test preformed to narrow down what might be causing it.  The results will take 4-5 months.  Over the last couple weeks he's been rubbing his left eye…Continue

A famous USA university movement disorder clin

Started by neta in General. Last reply by neta 7 hours ago. 5 Replies

 "Unfortunately this condition (referring to CA) cannot always be treated successfully.... There are not any newer or experimental treatments for this condition that i am aware of. "   Good luck,Name and title  _______________________Stanford…Continue info. via Genetic Alliance UK

Started by Alan Thomas in General yesterday. 0 Replies

GenomeSeqWeek, four events in February 2015 exploring the impact of whole genome sequencing | sponsored by Genetic Alliance UK.                                                                                     …Continue

Tags: Alliance, UK, Genetic, via, info.

Blog via AKU Society - Improving Treatment Access for our Welsh Patients: A Lobby Event

Started by Alan Thomas in General on Wednesday. 0 Replies

Improving Treatment Access for our Welsh Patients: A Lobby Event28-Jan-2015For Welsh patients with rare diseases, accessing treatment is a challenge. The application process can be complicated, and, in the case of our patients, access to full…Continue

Tags: Welsh, our, Patients:, A, Event

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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

John "JC" Colyer replied to Laur22's discussion Head, Eye, Nose Pain 2yr old boy
"Hope just an anti biotic is needed"
1 hour ago
Kay replied to lisa1949's discussion What vitamin or supplement can you take for energy if Vitamin B causes headaches
"I've been lucky so far that I haven't had low energy, but I can tell you that I have incorporated exercise into my life and I know I always feel more uplifted after.  Doesn't seem to matter what it is or how often you do it, just…"
1 hour ago

Beryl Park left a comment for Dawn
"Hi Dawn, welcome :-) It also took me too many years to mention, before finally a diagnosis was given. Mine started in my early 40s. Constantly being given what is almost the brush off by your family Doctor isn't reassuring, it's stressful…"
1 hour ago
Laur22 replied to Laur22's discussion Head, Eye, Nose Pain 2yr old boy
"Just talked to neuro, we're going to the pedi as it might be a blocked sinus due to his molars coming in. Thank you all, I will keep you updated!!"
1 hour ago
Kay replied to Laur22's discussion Head, Eye, Nose Pain 2yr old boy
"I've been in healthcare most of my life. 1) kids don't usually make it up if something hurts 2) I would take him to the ER.  I wouldn't wait for neuro.  You don't know if this is related to the ataxia that he has.…"
1 hour ago

Beryl Park left a comment for Heather
"Dear Heather, I hope someone can help and get in touch with advice. I'm sure we'll all be as supportive as we can. xB"
1 hour ago
Laur22 replied to Laur22's discussion Head, Eye, Nose Pain 2yr old boy
"Thank you all for your response. By saying he needs to go to an emergency room, is that due to these are warning signs of an attack coming on? Or are these warning signs of something else? When he says he has his booboo, within 30secs he's back…"
3 hours ago
John "JC" Colyer is now friends with Jinni and Irina
5 hours ago

Top Discussions 

1 What vitamin or supplement can you take for energy if Vitamin B causes headaches

What vitamin or supplement can you take for energy if Vitamin B causes headaches

Posted by lisa1949 on January 26, 2015

2 Feelings of Despair.

Feelings of Despair.

Posted by Ozzy on January 25, 2015

3 Ataxia Specialist

Ataxia Specialist

Posted by brittie on January 23, 2015

4 Calf tightness?

Calf tightness?

Posted by lca on January 24, 2015



Posted by Misti Ann Wessels Stagl on January 23, 2015

6 Head, Eye, Nose Pain 2yr old boy

Head, Eye, Nose Pain 2yr old boy

Posted by Laur22 on January 29, 2015

7 Walkers/Rollators


Posted by Misti Ann Wessels Stagl on January 23, 2015

8 Tired tongue/chewing difficulties?

Tired tongue/chewing difficulties?

Posted by runner on January 23, 2015

9 Healthier Eating

Healthier Eating

Posted by Danielle Shallcross on January 24, 2015

10 Hey 'True Blue'

Hey 'True Blue'

Posted by Ozzy on January 24, 2015


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Blog Posts

Home Health Aid

Posted by Steven M. McVicker on January 23, 2015 at 1:36pm 4 Comments

I was just diagnosed with SCA in 2014, but Im already to the point.... My wife hired a home health aid because of my balance... We are moving to Lake City, Florida....

Does anyone know how to get her approved so Department of Human services… Continue

Life With Ataxia - a diffferent perspective

Posted by Jonas Cepkauskas on January 23, 2015 at 11:00am 0 Comments


If you are new and inexperienced, this will make things easier. If you are a veteran on this journey, this will change some ideas and misconceptions. If you are tired of the endless maze of…



January 2015

    International Ataxia Awareness Day is September 25 

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