Make A Little Movement – II

19927674_sYou’re surely aware of Dystonia’s White House Petition – which is hanging around thru Oct. 9 – but I feel compelled to introduce a group of individuals who deserve a round of applause and laud a community that made more than a little movement to advance our cause.

Mike Delise is an advocate for patient Jason Dunn who’d carry the entire Dystonia community on his back if he could. Mike conceived the petition last Spring and refused to be deterred when it didn’t take off, planning a second effort for September. Mike has gone the extra mile for Dystonia, earning himself permanent membership in our family.

Then there’s Treacy Henry, a determined Dystonia patient who’s the juice behind dystoniaaware.org and the Make September Dystonia Awareness Month Facebook and Twitter communities. She’s devoted heart & soul to gaining White House recognition of Awareness Month and stands an amazing example of activism in action. Treacy’s daily communications have been the fuel keeping our community focused on our goal.

Kudos go to Angela Winnick for conceiving the recent Twitter Flash Mobs prompting us to head to Twitter to raise a united voice promoting #DystoniaAwareness. In less than a week, these Flash Mobs catapulted #DystoniaAwareness to trend #1 on Twitter, not bad for a rare and little known neurological disorder!

I couldn’t be more proud of our community…or more appreciative of the friends who’ve come forward to support us. I invite everyone to join tonight’s Flash Mob at 7pm ET. Visit our Facebook Event for a list of Tweets targeting news media and celebrities. Here’s one anyone can use: “Challenge you to a RT to support #DystoniaAwareness! www.dystoniaaware.org

xxx

Pamela

6 responses to “Make A Little Movement – II

  1. Beautiful what a team!

    • Stephie, The Dystonia community has truly stepped up this September and I couldn’t be more thrilled. It was my pleasure to share just a few of the individuals who are working so hard to raise awareness of this disorder. xxx -Pam-

  2. Great news and kudos! And kudos to you….. Ciao

    Sent from my iPad

    >

  3. I have Oromandibular Dystonia and teach medical professionals. I am an Occupational Therapy Assistant. You can find info about DYstonia on my website..www.CEU-ME.com

    • Thank you so much for visiting this site and taking the time to comment. I actually visited both of your sites. You are doing wonderful work. Have a great weekend. -Pamela-

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