Monday, June 23, 2014

a couple of of new pieces of information

Lately things around here have been quite hectic and busy seeing that I am 9 months pregnant, but there is a lot of new information floating around that I want to share with you all and hope that you all will be willing to share with others, as well.

First off, the fundraising for the NY Marathon is beginning. Tony has a website set up that will accept donations toward his $2500 minimum goal that is required to run on the DMRF team and that website is www.dystonia-foundation.org/tonysharp. Please consider making a donation, as small or large as you can, to support him in this opportunity to run in honor of my dad and all others who can't run! This money will all stay within the foundation and will go toward vital research on the causes and cures for Dystonia! Thanks in advance for your donations to this!!!

Second thing is that there is a petition that needs as many signatures as we can get for the US to recognize September as Dystonia Awareness Month. This petition is set up through the White House and can be accessed by going here: https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-september-dystonia-awareness-month/c64kfwpJ
You must be 13 years old to sign but your nationality doesn't matter! Please consider signing this petition for all of those throughout the US to be able to be recognized in September! Share this link with your friends and family, as well, and ask them to go on and sign it! This takes a mere moments of your day and will make an impact for lifetimes to come if we can get September recognized as Dystonia Awareness Month!

Thanks so much for your attention to these super important opportunities to make a difference in the lives of people with dystonia and very likely, the next time you hear from me, it will be sharing the addition to our family with you all!

Blessings and continue to share what Dystonia is to someone every day! It truly makes a difference!
Rebecca

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: http://dystonia-foundation.org/tonysharp    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...

Rebecca

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!

<><
Rebecca