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 BensFriends.org, 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

  • Exciting Update: Double Your Impact for Rare Disease Support!
    by Ben_Munoz1 on December 13, 2024

    I hope this message finds you well. As we approach the end of the year, I wanted to share an exciting update on our “Friends Helping Friends” campaign and a special opportunity to double your impact. Campaign Progress: Thanks to the incredible generosity of supporters like you, we’ve raised almost $11,000 towards our $50,000 goal. This is a […]

  • Reminder Dec 10 2024…Webinair..All about Troriluzole presented by Dr Susan Perlman
    by Beryl_Park on December 5, 2024

    Copied from the National Ataxia Foundation. We have received lots of questions from our community about Troriluzole, an investigational therapy for SCA. Join us on Tuesday, December 10th at 1 pm CST, for All About Troriluzole presented by Dr. Susan Perlman. In this session, we will go over some of the most common questions we have received about […]

  • This Giving Tuesday, Make Sure No One Faces Rare Disease Alone
    by Ben_Munoz1 on December 2, 2024

    As we approach the end of the year, I’m reaching out with an urgent request on behalf of thousands of patients with rare diseases and chronic illnesses who rely on Ben’s Friends for support and connection. Our mission is critical: to ensure that no one faces a rare disease alone. Thanks to donors like you, we have recently: Redesigned our […]

  • Autoimmune and Gluten Ataxia Zoom Meeting with a Specialist Neurologist
    by Beryl_Park on November 29, 2024

    Our next Autoimmune and Gluten Ataxia support group meeting will be held on Thursday 12th December from 14:00-16:00pm. We are delighted to announce that for this meeting, Professor Marios Hadjivassiliou, a consultant neurologist at one of the specialist ataxia centres, has agreed to join us and give a presentation on gluten ataxia. This will be […]

  • Happy Thanksgiving to
    by Chas521 on November 27, 2024

    Happy Thanksgiving to all that celebrate it. 1 post - 1 participant Read full topic