Monday, May 12, 2014

Gosh it has been forever...

Ok, so if i was keeping this blog up for someone else, i would TOTALLY have been fired by now - ugh! So sorry that i haven't updated until now, but better late than never...... i hope! :)

Advocacy Day in Washington DC was one of the most incredible experiences I have ever had. Let me just say, though, it is not for the weak at heart! This pregnant lady was WHOOPED at the end of it but what a 'good exhaustion'! Tony, Chip and I were able to participate for Alabama AND Pennsylvania and that was just incredible. Something about walking into an office and seeing the state seal of Alabama, the Alabama state flag, and hearing familiar accents warms your heart and even gains you a little credibility with the staffers. All the same, being able to talk about our experience moving and now living in PA and how many people we have encountered that have Dystonia in PA and felt alone, too, was a powerful testimony to the uneducated nature of this disorder and allowed us to passionately and personally ask for change! We had an incredible time and loved every minute of it!

Also, just recently, Tony has finalized his spot in the New York Marathon in November running on behalf of the Dystonia Medical Research Foundation and will be running with a team that also includes a great friend of ours, Emily Miller. They each are in the process of raising their funding (minimum of $2500 each) for the marathon and the foundation and if you are interested in donating, Tony's donor site is:    and Emily's isn't quite set up yet. Please consider donating, even if it is just $10!

On another note, Dad is doing INCREDIBLE! He went to the grocery store with my mom yesterday for the first time in over a year and a half, taken mom out on lots of dates to their favorite restaurant, made a trip to a jeweler to get my mom a piece of jewelry for Mothers Day that she wasn't expecting, and is in and out of the house quite a bit now. Still not driving, but boy is he in a great place compared to this time last year! He is still in the process of treating his Dystonia as he has and continues to make progress and learn a new way of living with Dystonia that he hasn't before.

I hope that this finds you doing well and educating someone daily on Dystonia! Be blessed and until next time...


1 comment:

  1. Thank You Becca for representing TWO states for us at Advocacy Day! You never stop amazing me, those are a lot of steps for Momma! Tony's on his way to NYC- Wahoo! You're family sure has put their walking shoes on.
    Not to be left out your DAD!
    Just how wonderful it is to hear of his accomplishments ~
    You helped him get to where he is today! I'm sure he is so very proud of the daughter that you are. Chip has a lot to admire in his Grandpa. Looking forward to the ultimate family photo with all of you including the lil' bun in the oven! Much Love ~