Welcome to LivingWithAtaxia.org

You Found Us!

Welcome to LivingWithAtaxia.org. We're glad you found us. We're a little corner of the Internet where patients (and friends and family) with all forms of Ataxia can get together to share stories and provide each other with a little support. It's amazing how good it feels to share what's on your mind, and to listen to somebody who needs support.

What is LivingWithAtaxia.org

We believe that no one should ever have to suffer alone. In 2006, I had a rare form of a stroke (AVM) that left me hospitalized, frightened, and alone. My friend Scott and I created an online support group for AVM survivors (http://www.avmsurvivors.org - 500 members) around the world. After learning about Ataxia, we knew we had to help.

What Can I Do Here?

1. Maintain a Blog: share your personal experience to help you deal with the tough times you're going through and to help others who read your story know that they are not alone.

2. Meet Friends: you'll have good days and bad days. This is a place where you can safely rant and rave.

3. Invite Others: there are many others out there who could benefit from this online support community. If you happen to run across someone's blog or bulletin board posting, send them a message and a link. Then welcome them when they show up.

LivingWithAtaxia.org is your site. If there is something we can do together to make it better, please let us know.

Ben

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Comment by nati cepeda on January 14, 2010 at 10:54pm: wow, i found this site today and i have been dying to start something like this. i try to do a lot through facebook, but this is great and i n many sufferers would benefit in many ways.

thank you

Comment by Ben Munoz on June 24, 2009 at 6:12pm: Thanks for the kind words. Please do everything you can to spread the word. http://www.livingwithataxia.org...

Comment by Lit Smith on June 24, 2009 at 4:36pm: Hello Ben

I found this site by chance and it is brilliant.

Thank you so much for taking the time and effort to set it up and I am sure it will continue going from strength to strength!

You are a star

Love Lit

Comment by Ben Munoz on May 11, 2009 at 4:08am: Mary,

The site is now configured to search by location. Click on members -> advanced search. Thank you for the suggestion.

Ben

Comment by Alan Thomas on May 9, 2009 at 2:01pm: Great place, to get to know people, in the same situation, as us ATAXIANS.

PLEASE, let us know if there are any problems (on the site) or any suggestions, that may be incorporated !!

Alan
Wales
UK

Comment by Kati on May 9, 2009 at 1:24pm: I think this is a great site. Thanks for setting it up for us Ben.

Comment by Mary Englund on May 9, 2009 at 1:02pm: Ben, I stumbled upon this site by accident and realized it might be a good place to talk about Ataxia, which I can't talk much about in my professional life. Of course, that a bit silly since this is a major part of my life, but in business any impairment can really create a negative image problem with the public as a whole (a shame). Anyway, I'll check regularly to be sure I get a chance to meet others. Search by city or location would be helpful as I know no one with Ataxia in my locale.

Comment by Ben Munoz on December 18, 2008 at 1:33pm: I want to extend a warm welcome to those who have just joined.

Have an external blog? We can feature it on our main page (like Mark Dias & episodicataxia.org)
Trouble using the site? Please let Scott or me know and we'll do our best to assist.
Have any suggestions on how to improve this site? Shoot me a message.

Ben

Comment by Mark Dias on December 9, 2008 at 11:56am: Hi. I have episodic ataxia. And I tell my story in Spanish and English on my episodic ataxia website. www.episodicataxia.org

Mark
www.episodicataxia.org

Comment by Patsy on December 9, 2008 at 3:49am: Hi Ben - I read your message on Ataxia UK forum and decided to look by. I am addicted to my computer and check out facebook, MSN Messenger, Ataxia UK forum, etc etc - every day !! Not sure I have the brain power to take in much more but I will try to include this site. I found Ataxia UK in 2004 and am now one of their local support group coordinators. I only suffer midly with CA but at 66 years, age is not on my side when it comes to coping with spasticity in leg muscles. I like to keep in touch and think it great idea to support one another.