Thursday, January 23, 2014

Advocacy Day should be every day but it's coming in April!

Well there is a lot to catch up on over here at the Dystonia Daughter! First on the agenda is that the Dystonia Daughter, here, is going to be adding one more to our family in July! So be on the lookout for updates as well as some possible gaps in posts come this summer as we will be adjusting to having a 6 year old and a newborn in July. Next on the agenda is that I am so proud to say that the appropriations bill passed by Congress this week included Dystonia on the list of eligible conditions for the Department of Defense’s Peer Review Medical Research Program. AND this program received an increase of $150 million over the FY13 level. This increase in funding will allow more research to be funded and/or for research to be funded at higher levels. This is an incredible success on capital hill and we should be proud of all the groups and individuals who petitioned their congressman/woman to make this happen! Lots of hearts and stories that will never be heard or known were expressed to those in Washington DC and they were heard! YAY FOR A SUCCESS! Now, on the topic of Capital Hill comes my next topic and that is that Advocacy Day in Washington DC is coming up in April! I missed this event last year as I ended up in Alabama helping out my dad during that time and so I am doubly looking forward to being able to participate in this! My intention, though I live in Pennsyvlania, is to be in contact with the Alabama representatives as well as some other southern representatives that won't have representation in DC that month. NOW - all of that to say, if you would like to join me and others on Capital Hill to lobby for change and to continue to keep Dystonia on the front page of DC's mind, contact me and I will get you in touch with those that are organizing this event. It is a powerful event and one that leaves not just our representatives in Washington DC touched and changed, but those that attend speak of it as one of the most powerful opportunities they have experience to share with the lawmakers their struggle and what they are looking for. So join us on the steps in Washington DC and let's continue to make Dystonia known and funded!

OK, so this is a blog that seems all over the map but i'd like to celebrate a victory in my dad's Dystonia battle. He is doing amazing! SO amazing that he was able to take my mom out to dinner last night for her birthday! Now, doesn't that seem like something that we each, mostly, take for granted and take advantage of the opportunity, and even something that those without the disorder don't think about celebrating the fact that OTHERS we love can go out for an amazing birthday dinner, but my how Dystonia changes our perspective on life!

Be changed this day in your perspective and live today as though you won't have tomorrow. Love more, worry less, and live for now! Share your Dystonia story or the story of one you love and make a difference TODAY!


  1. Everything that you write about in this is extremely exciting!!
    DC is rocking!
    Your DAD is feeling better!
    Blessings on a new BABY!!
    you know I luv ya darlin' & I look forward to seeing you~ <3

  2. Everything that you write is so exciting!
    DC is rocking!
    DAD is feeling better!
    And BLESSINGS on a new BABY!
    You know I love ya darlin' & I can't wait to see you! <3

  3. Rebecca, I so look forward to meeting you at Dystonia Advocacy Day this April. Please be sure to introduce yourself, I'll be looking for you as well. -Pamela-