1. Become a Member
2. Make Friends
3. Post to a Forum
4. Join or Create a Group

Check the Help tab above.


Since site content and usernames are google searchable, please protect your anonymity by creating a unique username.

To change your username, click here. 

LivingWithAtaxia is a peer-to-peer network

To get support, give support.

Doctors List


All of the material provided on this site is for informational purposes only and is not a substitute for professional medical advice or treatment. Always seek the advice of your physician or qualified health provider with any questions regarding your health. Do not disregard professional medical advice or delay seeking it because of something you read on this site.

Gift Store


Your Community Managers

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.


ClinicalTrials.gov Studies

Loading… Loading feed

Our Guidelines

Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
  2. No spam.
  3. No personal attacks or defamatory posts.
  4. No offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos).
  5. No specific doctor or hospital name mentioned in a negative context, for legal reasons. Specific doctor or hospital names in a positive context are welcome.
  6. No sharing of members' posts to other sites without their express permission.
  7. No solicitations or promotions of goods or services for sale. No fundraising without the permission of the moderators.
  8. No email addresses or phone numbers on the forum, for your security.
  9. Religious content must be restricted to the prayer group.
  10. No politics, please.

Thanks for your cooperation.

Useful Links

**** 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.


Phase 2 Trial with Reata Pharmaceutical's RTA 408

Started by sunny8088 in General 2 hours ago. 0 Replies

http://www.curefa.org/active-clinical-trials/reata-phase-2-trial-for-rta-408Ages: 18-40 at CHOP; 16-40 at Emory, Ohio State University, University of Florida,…Continue

Cycling for FA Research and Awareness From the USA to Ireland

Started by Alan Thomas in General 19 hours ago. 0 Replies

Cycling for FA Research and Awareness From the USA to IrelandOne of the main symptoms of Friedreich's ataxia (FA) is loss of proprioception or knowing where your arms and legs are in space without looking at them. This causes loss of balance and…Continue

Tags: the, USA, to, Ireland, From

has anyone tried Botox for Ataxia?

Started by Karen Ann in News, Research, and Clinical Trials. Last reply by Patsy on Tuesday. 3 Replies

I am curious if anyone has tried Botox for Ataxia.  Did it help, where you able to recover control of your affected limb?  Did you experience any negative affects?Continue


Started by Carlous Bobo in General. Last reply by FeelingOurWay Jun 25. 2 Replies

I exercise 3× a day and the stiffness in my knees and legs will not give me any relief. Also I am afraid to go down steps but I can go up.Any ideas *?

Cerebellar ataxia

Started by Carlous Bobo in General. Last reply by Max on Saturday. 8 Replies

I fad CA for 6 years now and I cannot get rid of the leg and knee stiffness. It never give me relief no matter how much movement and exercise I do. Is anyone having this issue and if so what are you doing to help.


Started by Jacob Nicholas in General. Last reply by rose Jun 24. 1 Reply

Hi All. Does anyone out there got cerebellar ataxia (multiple syndrome atrophy) MSA. How long, what are symptoms you have n how you dealing with it. Anyone from Asia or Singapore. Rgds Jacob

Looking for possible connections

Started by Beryl Park in General Jun 23. 0 Replies

I put something similar on Ataxians in Canada.Although diagnosed as Idiopathic SCA I've been told I have links with the recently discovered gene SYNE-1. This is said to be French Canadian in origin.My grandmother corresponded with 'possible…Continue

Is Ataxia Contagious

Started by barb1228 in General. Last reply by Ozzy Jun 22. 3 Replies

For those of us with non-genetic forms of ataxia, has it ever been passed onto a family member, like a spouse?  While all health care people tell me that Ataxia is not known to be contagious, I can't help feeling that I caught it from an…Continue

Mobile App

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now.

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

Nancy commented on Earlene Watson's blog post people that don't accept your ataxia
"A disappointing aspect of some is to Blame the Victim.  People did it for years with rape victims. Indeed, even in what one would hope were more 'enlightened' times and even with the amount of education available in regard to…"
1 hour ago
neknoBF left a comment for LifeGoesOn
"Hello! If you would like to ask questions or introduce yourself, feel free to open a discussion. Best wishes and welcome to the group. :)"
1 hour ago

Madere (dancermom) left a comment for LifeGoesOn
"Welcome, LifeGoesOn, to this supportive community. Feel free to open a discussion to introduce yourself or ask questions. Best wishes!"
1 hour ago
LifeGoesOn is now a member of Living With Ataxia - Online Support Group
1 hour ago
sunny8088 posted a discussion
2 hours ago
BWGreen commented on Earlene Watson's blog post people that don't accept your ataxia
"I was diagnosed with an unspecified SCA 6 years ago - since then I (and others around me) have noticed things getting worse.  Some around me I tell what I have - others can think what they want, since I don't really care.  If someone…"
3 hours ago
Anna liked Alan Thomas's discussion Cycling for FA Research and Awareness From the USA to Ireland
4 hours ago
Earlene Watson liked Alan Thomas's discussion Cycling for FA Research and Awareness From the USA to Ireland
4 hours ago

Help Us Help Others

Follow Us

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

Support Ben's Friends

Bens Friends

To Support LivingwithAtaxia.org, Click an Ad. Or Two.


July 2015

    International Ataxia Awareness Day is September 25 


Are You In Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for the right phone numbers for your region.


BensFriends.org is proud to partner with a number of organizations to better support our members.

To learn more about our partners, please visit this link.




Ben Munoz created this Ning Network.

© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service