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.

Read More…

 

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

  • Skyclarys approved in the EU
    by Beryl_Park on February 13, 2024

    The EMA approves the drug Skyclarys® to treat adults with Friedreich’s ataxia in EU countries On 12th February 2024, the European Medicines Agency (EMA) announced that they have approved the drug Skyclarys® (Omaveloxolone) for the treatment of Friedreich’s ataxia in adults in EU countries. This approval by the EMA will not result in approval […]

  • Aids to help cope with Tremors
    by Beryl_Park on February 13, 2024

    Essential Tremor Assistive Devices, Therapies & Techniques - Essential Tremor Assistive Technology is an umbrella term that includes assistive, adaptive, and rehabilitative devices for people with disabilities. The IETF hopes you find the assistive devices and technologies listed enable you to perform daily tasks with […]

  • A Webinair re CANVAS (Cerebellar Ataxia,Neuropathy and Vestibular Areflexia Syndrome)
    by Beryl_Park on February 12, 2024

    Join us February 15th at 10:00 AM CST for our webinar series on CANVAS. During this webinar, research expert Dr. Andrea Cortese will teach us how it is studied and give an overview of the current state of research and drug development for the disease. Research & Treatment for CANVAS: Webinar Registration - Zoom 1 post - 1 […]

  • Daily survival
    by Saboath on January 25, 2024

    Call your childhood “ imaginary “ friend , very useful nowMy living quarters 4 posts - 3 participants Read full topic

  • Looking for Your Stories!
    by ModSupport on January 10, 2024

    @trust_level_0 Dear Living with Ataxia Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to know about this wonderful service. To that […]