Wide World Upbeat Awareness, Awesome OutreachBy Scott Pierce
What is my resolution? This year, it's to be a strong advocate and raise as much awareness for Dystonia and other rare, disabling movement disorders and diseases as I can. I would also like to start fund raising projects, a support group, and make sure that at least 75% of the people in my community have heard the word Dystonia!! My resolution actually started in December. I wanted to do something small in my community, to see what kind of feedback I could get. So, I decided to see how many people I could get on Facebook to walk or ride 3 miles in the local Christmas Parade. The reaction I got from Facebook was some what overwhelming! I had received 40 confirmations from Facebook and more from other, already committed sources, and 39 of them were maybes. I was looking at the possibility of 60 people walking to raise awareness for Dystonia in the parade. I began thinking, we can't just walk. We have to let these people know why we are walking. So, I contacted the Dystonia Medical Research Foundation [DMRF] and spoke to one of their event coordinators for advice. They gave us 75 balloons that had their logo on it. A local florist, "Always and Forever", donated their time inflating them. They also made us a blue bow to put on the vehicles that we would be using in the parade. Another local merchant, “The Mighty Dollar", donated all the candy and blue and white striped candy canes, to which my mom and I tied a tri-fold brochure that explained Dystonia. The DMRF also donated kid tees, bumper stickers, and more brochures which we handed out during the parade. "Sign-R-Rama", donated a six foot banner and two door magnets to put on the vehicle. A local grocery store, "Bi-Rite", gave us two cases of water for the people in the parade. On the day of the parade, the forecast was cold and a possible winter mix. I knew our numbers would drop. We decided a truck would be more weather friendly than a convertible corvette! We had about 18 people. Some (including myself) walked, passing out the candy canes, bumper stickers, balloons, etc. While others, wrapped in blankets on the back of the truck, threw out wrapped candy and the kid tees. Since the parade, I have received so much positive feedback. I’ve also received emails from people I've never met who have Dystonia or some other type of movement disorder thanking us for letting our community know what the word DYSTONIA is and putting something positive behind its name! People I've never met ask me to add them as a friend on Facebook everyday; just wanting someone to talk to, or just wanting someone to listen to their story. The parade will now be an annual event. Before the parade, when I thought we might have 40-60 people, someone told me, "It's a Christmas Parade not a Dystonia Walk. It is tacky to hand out that sort of stuff during a parade!". If you do it right, anything is possible! I love when someone tells me I can't do this or that. I like proving people wrong. Just like living with Dystonia; in my opinion, having a positive attitude about it is better than medication! I have Generalized Dystonia. I have had it since 2004. I had the DBS (Deep Brain Stimulation) surgery July 17, 2007. A lot of people were skeptical about my decision to have the surgery. It has been a blessing for me, though I still go to physical therapy at least 2-3 times a week. I would like to earn a Masters of Science in Rehabilitation Counseling, yet, my ultimate goal is to start a positive and up beat support group to take advocacy and fundraising to a whole new level. Haven't walks, bake sales, and car washes been done enough? Finally, I would like to thank everyone who helped out with the parade, all who supported me then and who will in future events. Please, join the Dystonia Awareness Group on Facebook, there is a link on my profile page. And to every Dystonic out there, we may have been dealt a bad hand of cards, but don't fold. Go for a Royal Flush!! Happy New Year!!
Scott Pierce is easily the most upbeat person DLM has met in a good while. We're making it our resolution to clone him by June.
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