WEGO Health

Ellen S

Twittering about Dystonia

Hey group! :)

I recently became Twitter-literate and have started using it to help me connect with others dealing with the same or related health issues, including DYSTONIA. (Never underestimate the power of one single voice!) I haven't found many with Dystonia using this technology yet tho, so thought I'd do two things here...

#1. Invite you to Add me if you already Twitter. I'm Eschnak and Eschnak2 and AntiquityHill . If you follow me, I'll follow you back!
#2. Invite you to learn how to use Twitter if it is new to you. The more we mention Dystonia, the faster we'll get the word out to others!

There is a free webinar here at WEGO Health to teach you how to use Twitter. Below I'm going to paste the invite from Vanessa here at WEGO Health. I hope everybody will consider joining us on Monday. I learn things a little slowly, so this will be my second webinar.... trying to pick up on things I missed the first time around lol! Don't worry, no talking necessary if you don't feel the need. Just join us and learn to Tweet!

Here are the details:

Twitter Fundamentals for Health Activists

Hi everyone,

I hope that this note finds you all well.

Just a quick heads up that I'm presenting a webinar on Monday, April 20th at noon and 4PM entitled, Twitter Fundamentals for Health Activists.

This is a great session for anyone curious about Twitter or for those of you who already have a Twitter account, but are wondering "now what"? Join us as we share tips and tricks about how to make Twitter work for you as a Health Activist.

For more information or to RSVP: http://is.gd/sfRl

Hope you'll be able to attend - it promises to be an informative and fun-filled hour!

Be well,
Vanessa
--
Community Manager
vanessar@wegohealth.com

Tags: dystonia, information, technology, tweet, twitter, webinar, wego

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Replies to This Discussion

beka Permalink Reply by beka on April 18, 2009 at 3:34am
You can now find me twittering at http://twitter.com/c4dystonia ! Join in the game if you'd like to hear what nursing on the run is, how dystonia is, DBS programming effects and news, updates, whatever comes to mind...

beka

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Ellen S Permalink Reply by Ellen S on April 18, 2009 at 7:58am
Beka, it says this page doesnt' exist

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beka Permalink Reply by beka on April 21, 2009 at 5:26am
Sorri - confused at 5 am ! you can find me at http://twitter.com/care4dystonia

That shoul be the right one !!

beka

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BDrake Permalink Reply by BDrake on April 21, 2009 at 9:35am

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Jenn Permalink Reply by Jenn on April 28, 2009 at 8:50pm
oooo ooo ooo ! Is this where we drop our twitter addresses?
twitter.com/promogurl

I am happy to say that I am being followed by a celebrity :P
and they are getting bombarded with my random dystonia comments

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robert Permalink Reply by robert on April 28, 2009 at 3:20pm
I had looked at Twitter over a year ago and thought it was silly. Since then, I mean recently, it has taken off big time. The fact that politicians are using it extensively to (brainwash) get their message across proves that it has become a powerful medium. One whom I follow, a Mr Prescott who is a senior figure in the UK Labour Party, has been given the job of using the Internet to reach the next generation. President Obama was I believe a pioneer in using the new technology. Anyway, we are still quite an elite group as the following search on Twitter reveals:

http://search.twitter.com/search?q=dystonia.

Does anybody have a list of influential folks worth following, not necessarily just the "big" names?

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beka Permalink Reply by beka on April 29, 2009 at 3:56pm
Hi Robert -
Famous people with dystonia can and should be followed like mad...They should be bombarded with emails from patients...to cme out as an entire group.. not piece by piece...
Here's a list from the c4d site :
The following is a listing of artists/activitists with various forms of dystonia :

Billy Mclaughlin- Focal dystonia ( Music )
Glen Estrin - Muscians dystonia
Leon Fleischer -focal dystonia ( Music )
Debra Freidman - dystonia ( Music )
Jason Solomon - focal dystonia ( Music )
Scott Adams ( aka Dilbert ) Focal dystonia
Diane Rehm ( NPR Host ) Dysphonia
Robert F. Kennedy, Jr. ( Activist, Environmentalist ) Dysphonia
—— Founder (United for Peace ) Dysphonia
Jenny Craig ( Diet Guru ) OMD
Lynn Johnston ( Cartoonist ) Focal Dystonia
Rem Murray ( NHL Hockey Player ) ST
Chip Hanauer ( Race Car Driver NASCAR ) Dysphonia
Linda Thompson ( Music ) Dysphonia
Johnny Bush ( Music ) Dysphonia
Henry Austin ( Music ) Dysphonia-Focal Dystonia
Martha Grimes ( Author ) Focal Dystonia
Alison Young ( Music ) Focal Dystonia
Reinhard Gerbel ( Music ) Focal Dystonia
Derek Thompson ( UK Actor ) Dystonia
William Roth ( Author, Disability Advocate ) Dystonia/DBS
Opus Cartoonist ( Cervical dystonia )
Julie Sheldon ( Author, Dancer UK ) Dystonia
Christy Brwon ( Author UK ) Dystonia
Mike Harris ( News Reporter, Journalist ) Dystonia

beka

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BDrake Permalink Reply by BDrake on July 17, 2009 at 8:42am
For all of those who have a twitter account, Wed July 22 we are all going to try to tweet about #dystonia (w/ the hash tag # ) to get it listed as a trending topic. Post information, ask questions, mention how its affecting you...just use the word #dystonia as often as you can...Thanks guys!!

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beka Permalink Reply by beka on July 20, 2009 at 3:27pm
National Dystonia Twitter Day July 22 2009.

beka

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Jenn Permalink Reply by Jenn on July 21, 2009 at 12:54am
Hope to see you twittering Beka.. :P

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