Welcome Members

Welcome to Living with Ataxia Community!

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

  • Vision changes
    by Chas521 on May 26, 2023

    I’ve been noticing that my depth perception problem and sensitivity to bright sunlight are changing and not for the better while the sensitivity has been increasing. Others with Ataxia have spoken about vision changes but does this sound familiar? 7 posts - 3 participants Read full topic

  • Webinairs hosted by the National Ataxia Foundation…on YouTube
    by Beryl_Park on May 26, 2023

    National Ataxia Foundation Webinars Ataxia Webinars On-demand recordings to learn more about managing your health. LIVING WITH ATAXIA DRUG DEVELOPMENT ACCESSIBLE LIVING GENETICS & TESTING DIET & EXERCISE MENTAL HEALTH BY ATAXIA TYPE FINANCIAL Read More... Est. reading time: 22 minutes Upcoming […]

  • 2023 National Ataxia Conference now available to view on YouTube
    by Beryl_Park on May 23, 2023

    This year was our first hybrid conference which was made possible with 30 speakers split between 13 general sessions and 5 virtual sessions! Thank you to all of our wonderful speakers. Did you know that all sessions from the 2023 Annual Ataxia Conference are now available on YouTube? You can find the playlist here: 2023 AAC - YouTube What session […]

  • Chair Yoga for Ataxia through NAF
    by Chas521 on May 19, 2023

    National Ataxia Foundation WEBINAR: Chair Yoga & Mobility Sacred Mountain Yoga’s philosophy is simple, if you can breathe you can do yoga. They teach a nondogmatic, no-fluff approach to yoga. It’s accessible for people in chairs and wheelchairs, Read More... Est. reading time: 1 minute 3 posts - 2 […]

  • COVID information
    by Chas521 on May 11, 2023

    I heard on the radio today that COVID tests and vaccines will no longer be free in the USA but charged through your health plan. 2 posts - 2 participants Read full topic