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 ataxia patient support community for people affected by Ataxia. The community is powered by BensFriends.org, a trusted network of patient support communities for rare diseases. At Ben’s Friends, our mission is to provide a safe and supportive space for patients with rare diseases, chronic illnesses, and their loved ones to connect and share experiences.

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

  • A NAF Webinair ….All about SCA4
    by Beryl_Park on March 25, 2025

    Our “Ataxia Type” series is made possible thanks to the Ataxia experts who volunteer. We are grateful for their time and expertise. Every month, we feature a new type of Ataxia from the perspectives of both clinicians and researchers. These webinars are a great resource to better understand Ataxia. If you missed this month’s webinar “All […]

  • Volunteer Opportunity: Marketing Manager (Email + Social Media)
    by Ben_Munoz1 on March 11, 2025

    Do you have experience with marketing and a knack for crafting engaging content? Ben’s Friends is seeking volunteers for two distinct Marketing Manager roles—one focused on email marketing and the other on social media. Both roles play a vital part in helping us communicate with our members and supporters. Key Responsibilities Email […]

  • Ataxia Webinars from the National Ataxia Foundation (NAF)
    by Beryl_Park on February 26, 2025

    You can register for an upcoming Webinar…and search for past Webinars. A wide variety of topics are covered …as well as focus on individual ataxia types. National Ataxia Foundation Webinars Ataxia Webinars On-demand recordings to learn more about managing your health. LIVING WITH ATAXIA RESEARCH & […]

  • Head is shaking
    by Milana-A on February 19, 2025

    My daughter has ataxia, and recently her head has started to tremble. To support her, maybe someone is using some kind of collars or similar devices. What can you recommend? 2 posts - 2 participants Read full topic

  • Positive results of Drug Trial re MSA inc MSA-C
    by Beryl_Park on February 14, 2025

    In this trial, ATH434 was compared to placebo in participants with early-stage MSA, including MSA-C. People with MSA-C are often misdiagnosed with cerebellar ataxia, because the symptoms can be similar in both conditions. This trial had sites in the UK. Ataxia UK - Supporting people with ataxia until a treatment or cure is found […]