Wednesday, March 28, 2012

Becoming an Advocate for Dystonia

Hello everyone! I know I have been M.I.A. and have really been out of the loop lately.  I really missed blogging several times a week but honestly I just haven't had much inspiration lately.  For the past few weeks I have really been feeling out of sorts and I really don't have an explanation for it.  For the first time in who knows how long my dystonia has been rather mild....knock on wood.  Spring did it's thing and ushered itself in along with the lovely pollen...hey isn't this what I wished for?  I have begun purging my home of all things useless , in an attempt to become more zen.  My calendar for the next few months has begun to fill up with all sorts of crafty, totally ambitious projects.  So what's my deal?  I dunno but I am definitely gonna pick myself up by the bootstraps and get myself together.  There's way too much to be inspired by so here goes nothing.




During my brief hiatus, I received correspondence from the Dystonia Medical Research Foundation.  I have been praying for a way to become an advocate for Dystonia and the answer was right before my eyes.  So I have decided to become a part of the Dystonia Advocacy Network and become a Legislative Advocate.  I am so thrilled to have the opportunity to share my story with Members of Congress and ask them to support the Dystonia community.  I really encourage anyone with Dystonia to get involved today.  It is a really simple process.  Here's the link!!  On a sidenote, while reading the latest pubblication from the DMRF, I was so encouraged as I read stories about young people with Dystonia who were being proactive to promote awareness and fundraise in support of the mission.  Truly an awesome thing.  They have even given me the inspiration to coordinate  a Dystance4Dystonia race in the future.

Well friends, I am back on board and really excited to share whatever comes my way in the coming months.  Ciao for now!!!

4 comments:

  1. Let me know when your run is scheduled for; I'm building my running endurance and would love to run for your cause!

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    1. Awesome!! I didn't know you enjoyed running too. I will be sure to keep you posted!! Thanks for stopping by my blog, Tammy!!!

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  2. This is amazing. I am putting together my first dystance4dystonia walk to be held on may 19th. I also am trying to become a dystonia advocate. I dont think enough people know about dystonia and we need to get the word out there! Are you going to D.C. in May? I would love to go but unfortunately, cant this year. I have an 18 month old and it would just be too difficult! I wish you the best of luck and hope we can chat soon!

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    1. Sorry it took so long to reply. Wow, that is so wonderful you have organized a dystance4dystonia event!!! I am trying to make it to DC next month. Thanks for stopping by and please keep in touch. Keep up the good work advocating for a cure for Dystonia!!

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