Finding support for Ataxia? Connect with people like you.

A welcome banner for Living With Ataxia community featuring a hopeful patient and caregiver

Living with Ataxia is an online patient support community that is powered by, a network of patient support communities for rare diseases. Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

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.

This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.

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How is Ben’s Friends Different from Social Media and Other Support Sites?


Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together..

Ben’s Friends: Safe and Supportive. 
And anonymous to keep it that way.

Why create an account?

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join. 


Latest Discussion

  • Shoe Recommendation
    by lysa1444 on April 30, 2024

    Hi everyone! My mom has SCA type 10 and I am looking for a good supportive shoe for her. She has tried many shoes before and none seem to be helping with her feet pain or balance when she is walking. She is using sketchers right now but they are wearing out and the insole is already very flat and I assume uncomfortable. She has tried vans from a […]

  • Research
    by Sfields1 on April 28, 2024

    I have ataxia telangiectasia would stem cell therapy help even though I would have to go to panama to get it 3 posts - 3 participants Read full topic

  • Arizona Dry Climate
    by Sfields1 on April 18, 2024

    Hello I have Ataxia Telangiactasia and I currently live in Southeast Michigan I was wondering if anyone found that living in a dry climate such as Arizona helped ease symptoms? 6 posts - 5 participants Read full topic

  • Your thoughts
    by Chas521 on March 19, 2024

    Does Ataxia get to you sometimes? I know that it does me. Healthy folks just take their health for granted and I get jealous. 20 posts - 8 participants Read full topic

  • Join us April 10 2024….for a NAF Webinair with Specialist Neurologist Dr Susan Perlman
    by Beryl_Park on March 13, 2024

    Join us April 10th at 1pm CDT for our “Ask the Expert” webinar with Dr. Susan Perlman to answer your questions about Ataxia. This is an informal discussion-style webinar without a set topic. Closed captioning is available. You will have the opportunity to ask any questions you have related to Ataxia. Don’t have a question? Join us to listen […]