As many of you know, I have been planning a dystance4dystonia walk for a while now. The day has come and gone quicker than I would have liked but it was a very fun day. I am very proud of myself and very happy to announce that we raised right around $5,000 towards finding a cure for dystonia. We had about 60 adult walkers and close to 20 children there. There were 5 people (including myself) with dystonia and one mother of a girl with dystonia who was unable to attend. It was a gorgeous day and everyone seemed to enjoy themselves. I am hoping to raise atleast double this next year. I just want to say thank you to the YMCA for letting me host the event there. I have worked at the y for 12 years so everyone knows my story and they were very supportive of me. I also want to thank my family who helped me through everything. Not only did they help plan this walk but they were by my side every step in my life as I struggled to find a diagnosis and then they were there holding my hand as I went through two brain surgeries. I want to thank my amazing fiance for his love and support, and my beautiful daughter for giving me the strength to fight. I want to thank the families who donated and came to walk from as far away as Boston. There was one family who I dont even know who donated $500. I just cant get over how generous people are. I want to thank my very good friend Bill, who I havent seen in a long time and showed up to give me his support and donated $300!! I want to thank my friends who helped set up, clean up, register people, sell raffle tickets and get donations for this special day. My aunts, uncles and cousins were more supportive then I could of ever asked for and I cant thank them enough for all they've done. Also, thank you to everyone who donated baskets, water, fruit and anything else! Overall, people were just incredible and without all of their help, it wouldnt have been so successful. I also want to thank the Dystonia Medical Research foundation for giving me this amazing opportunity to promote awareness and to raise this money to find a cure! They helped me plan this whole event and were very helpful through everything! I am very pleased with how the day went and I am so excited to do it again next year!!!
Some days its hard to find the words to explain what dystonia feels like. It's invisible to most people, yet it shapes every hour of my day quietly, persistently and often painfully. I don't share this because I want sympathy, I share it because awareness matters and too many people still don't know what dystonia is, let alone how much it can affect someones life. Dystonia affects my hands, feet, back and neck. My hands ache as though they've been gripping something for hours, even when they're resting. My neck strains as if theres a weight hanging from it and no amount of stretching helps. My feet cramp and curl making sonething as simple as standing still feel like a test of endurance. I've grown stronger in ways I never expected. Ive learned patience, determination and resilience. Ive learned to celebrate small victories, like waking up with a little less stiffness or being abke to open a jar of spaghetti sauce. Im sharing this because I want people to under...
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