Living With Ataxia - Online Support Group


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Ben Munoz
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How to Create Group and Organize A Meetup in Your City

Started this discussion. Last reply by Ben Munoz Dec 17, 2011. 2 Replies

Trouble with the Send Button (or Other Buttons)

Started Aug 13, 2011 0 Replies

How To Make Our Community Easier to Find

Started this discussion. Last reply by Nick Ormsby Jun 27, 2011. 3 Replies

 

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ModeratorBen Munoz posted a blog post

May 2012 LivingWithAtaxia Community Newsletter

Dear Friends and Family of LivingWithAtaxia,We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities have reached four consecutive monthly peaks in all aspects of our activities, overshooting even the targets we have set ourselves two months ahead! Here are some highlights:Total members for all communities at the end of April: 17,629. This is 924 higher than March, our…See More
May 25
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Profile Information

Are you a patient, relative, friend, or medical professsional?
Friend
What type of ataxia do you have?
None
Is your ataxia progressive?
Not Sure
Is your ataxia hereditary?
Not Sure
If hereditary, do other members of your family have ataxia?
Not Sure
Please share your story with the community...
I'm the founder of LivingWithAtaxia.org, a community of people living with ataxia. Email me at ben@bensfriends.org.

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May 2012 LivingWithAtaxia Community Newsletter

Posted on May 25, 2012 at 9:00am 0 Comments

Dear Friends and Family of LivingWithAtaxia,

We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities have reached four consecutive monthly peaks in all aspects of our activities, overshooting even the targets we have set ourselves two months ahead!

 

Here are some highlights:

Total members for all communities…

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Moderator

April 2012 Community Newsletter

Posted on April 20, 2012 at 11:00am 2 Comments

Dear Friends and Family of LivingwithAtaxia,

April – the smell of spring in the air!

Spring brings a lot of positive notes: it signals growth and rebirth. As Ben’s Friends, our patient support group is growing real fast. As a member community, you’ll see stats on how we contributed to this growth as reported below. Be assured that no matter how small the contribution may be, it adds up and it is very much appreciated!

Our presence is being felt…

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Moderator

March 2012 Community Newsletter

Posted on March 22, 2012 at 11:59pm 0 Comments

Dear Friends and Family of LivingWithAtaxia,

February brought us great strides as our various communities of rare disease support groups gathered the largest number of new memberships of all time! The volume of blog posts, comments and discussions also increased. We at Ben’s Friends commend you all for your active support of our communities!

 

IN THIS ISSUE…

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Moderator

February 2012 Community Newsletter

Posted on February 22, 2012 at 10:25am 0 Comments

Dear Friends and Family of LivingWithAtaxia,

As you well know, living with Ataxia can be very challenging not only for you but to your families as well. This organization was built with a view to helping you and your families to live up to this challenge by linking you up with people who share similar experiences and have succeeded in maintaining a positive outlook!

Explore more how our community had helped members face the…

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Moderator

January 2012 Community Newsletter

Posted on January 26, 2012 at 10:00am 0 Comments

LivingWithAtaxia Members, Friends and Family,

As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like…

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Comment Wall (69 comments)

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Join Living With Ataxia - Online Support Group

At 9:58am on September 2, 2011, joehamed said…
NO ONE SEEMS TO WANT TO CHAT.....WHATS UP...WHATS NEW
At 2:57pm on August 24, 2011,
ModeratorAlan Thomas said…

LOLOL yes I know !

I was uploading a video when I counldnt find the video tab, but commonsense soon explored and found the right place.

 

welldone keep us informed

me very good

Alan

At 6:42am on August 17, 2011, dougmusical said…

 

Hi Ben,

Thanks for your interest.  I am just getting used to the website, also, thanks for setting all this up in the first place.

Cheers,     Doug.

At 6:01am on August 16, 2011, joehamed said…
New to all of this..i am a technophobe...would like to know more and to learn how people are coping...is there any advise on writing and publishing?
At 2:36pm on August 15, 2011, debbyj said…
Thanks Ben for the welcome and concern. So far I haven't had much time to spend with the group so far, but I can see it looming in the future where I will have lots of time on my hands...
At 8:26am on August 13, 2011, elkhot said…

Hi,

I'm an egyptian student ,have 28 years old and have friedreich's ataxia disease.

I regested as a master student at Lund university,Sweden.

I'm in Sweden now.

My program is to study two years ,and I had a scholarship but it was for only ten months but it's finished now.

So, I'm searching for any organization which can help me to complete my study.

Also i want an electric wheelchair from Sweden.

bye,

Elsaid.

At 1:28am on July 15, 2011, amandapoon said…

thanks for wriiting, i am as fine as i can be, it is challeging daily but i am hangine in there, thanks for checking.

amannda

At 8:26pm on July 5, 2011, VerballyVal said…
Hello!  Thank you for the warm welcome.  I have already "liked" the Ben's page on FB and shared the great YouTube video on FB and Twitter.  Thank you for creating this wonderful community!
At 11:48am on June 26, 2011, stevenmc gave Ben Munoz a gift…
Gift
Red Ribbon
thank you for being my friend
From the Gift Store
At 4:28pm on June 21, 2011, Jane Stephens said…
Thanks Ben and all of you..  I am a chatter on NAF also.  It is really hard for people to accept us as we are.  That's why these support groups are so important for us.  I had not heard of Ataxia until my neuro told me what it was a couple of years ago..  Then I found all the info I could on my computer.  It is not where we want to be but education is the best place to start.  My family has been very supportive.

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Blog Posts

So not ready

Posted by Timothy M Webber on May 31, 2012 at 7:56am 2 Comments

 Ok,not sure where to start, and not quite sure how I feel about this. As I'm sure many of you have gone through this or are going through this or something similiar. I use a cane (have been for almost 2 years), and for the last 5 days cannot…

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Facebook Feature Supports Organ Donation

Posted by Armando Abrero on May 28, 2012 at 8:03pm 0 Comments

We never realize the value of organ donation, until we're on the receiving end.…



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Something I never thought I’d say!!

Posted by John "JC" Colyer on May 27, 2012 at 8:45am 3 Comments

Something I never thought I’d say!!

Having a disability has different dimensions of struggle:

1. physical 

2. Emotional/ Mental

3. Everything else!

Its most times…

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Meet Sam Bridgman

Posted by Armando Abrero on May 27, 2012 at 8:10am 0 Comments

Meet Sam Bridgman, a 21 year-old junior finance major at University of Portland. He is a native of Seattle, where he grew up like any sports loving boy but more partial with baseball and basketball until he started showing signs of being ill. At…

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