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.
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
- SCA 26 warriorby AConley on January 2, 2025
I have been looking for someone that has the same form of ataxia as I do. I have SCA 26 and I would like to talk to someone who has the same thing. I’m getting to the point where I can barely walk and I don’t know what to make of it it’s distressing for me because I’m the only one that can do errands and stuff like that. 3 […]
- Wishing everyone a Happy New Yearby Beryl_Park on January 1, 2025
Happy New Year Everyone xx 4 posts - 4 participants Read full topic
- Last Chance to Support Ben’s Friends in 2024 - Every Donation Counts!by Ben_Munoz1 on December 30, 2024
As we count down the final hours of 2024, I want to personally thank the 100+ donors who have already contributed over $27,000 to our Friends Helping Friends campaign. Your generosity is nothing short of inspiring, and it lays the foundation for the vital work Ben’s Friends will accomplish in 2025. While we haven’t quite reached our campaign […]
- I'm new!by AConley on December 20, 2024
Hello everyone! My name is Amanda and I have a Ataxia 26. Last research known showed that there was less than a hundred people with my type of a taxi. I’m sure they need to do further research to find out more. I am currently 46 years old but I was diagnosed around 42. I have a total of eight kids and two grandchildren all the kids are grown. […]
- From Isolation to Connection: The Role of Community Supportby Ben_Munoz1 on December 19, 2024
As we approach the end of our year-end campaign, I wanted to share a powerful reminder of the impact your support makes. A Message from the Heart: We’ve just received an incredibly moving video from Jaz, one of our community members. In just a few moments, she captures the essence of why your support for Ben’s Friends is so crucial. Watch […]