Saturday, April 18, 2015

Dystonia Advocacy Day 2015

I was honored this year to attend the Dystonia Advocacy Network's Dystonia Advocacy Day yesterday on Capital Hill. I joined 100+ other advocated and proceeded to share my dad's Dystonia story and ask congress to help us in the fight for research funds. What a great day and what beautiful weather we had! I was able to traipse all over Capital Hill with Stephens attached and made a huge impact on congress. We were able to celebrate the passing of the SGR as well as thank them for their continued efforts with the DOD acceptance as well as ask, along with so many other activists to increase the NIH budget to $32 billion. Thanks, again, to the Dystonia Advocacy Network and all the groups associated with the DAN to make this opportunity for myself and other Dystonia advocates possible.

Now, I would like to take this time to remind you all, too, of the group of runners we have running the NY marathon in November. We are in the process of raising $25,000 for the DMRF and need your help. If you would so kindly print the flyer, post it at your work, share it with your friends, and consider donating yourself, we would all so greatly appreciate it. I also know that the more than 300,000 people in North America who suffer with Dystonia would appreciate it, as well! Bless you all and thanks for everything!

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