Tuesday, March 25, 2014

so much to share!

I have so much to share and such a short amount of time to do it in so I'm going to try to type fast!

Well, Advocacy Day on Capital Hill in DC is coming up in three weeks! I can not wait to reconnect with some amazing friends of mine as well as be able to take my husband and little boy along to spread the love of my dad and the passion for furthering the funding and awareness of this disorder to those on Capital Hill. I got the agenda today for the layout and gosh, it will be a full two days, but gosh, it will be amazing I'm sure! I am most thrilled that Tony is going to be tagging along and joining me in this! Boy am I blessed by my husband to do this with me and to support me in this endeavor so much that he has taken vacation time to do it along side of me! So on April 8th and 9th, know that there will be almost 100... that's right ONE HUNDRED... people spreading the word about Dystonia on Capital Hill and continuing to fight for those of you who can't travel and can't have the opportunity to do so!

ALSO, I am thrilled to say that my sweet husband (have I mentioned how blessed I am!?!?) AND my best friend up here in Pennsylvania are BOTH going to be running in the 2014 NYC Marathon for Team Dystance4Dystonia! This was an endeavor last year that I did with Jen Devore, who ROCKED IT, and this year I get to cheer on my sweet husband and dear friend! More info about this is coming up soon and because I have two people that will be running for this that are dear to me, that means, we have $5,000 to raise for awareness! But I know we can do it and so coming up soon, I will be hitting this hard and heavy! But for now, I am just going to be honored and blessed to have two people who care enough about me and my family to take on this endeavor!

Until next time and further information, know that I am always spreading news and information about Dystonia to those who don't know about it, always advocating for you, and coming soon, I along with 100 others will be on Capital Hill spreading the word and advocating for more research and funding! While I am doing my part, I ask you to continue to do your part.... whether big or small.... it is a part of the process and all parts are necessary! So Thank you from me to you for what YOU do to spread the word about Dystonia, as well!


1 comment: