Before August of 2015, my sister and I were alone in this fight against Huntington’s Disease. Of course we had our friends and family to help us spread awareness and go to the Team Hope Walks, but we did not have anyone outside of that circle who could fully relate to us.
August 2015 we were accepted to the very first North American HD Camp. This is where we met life long friends. I didn’t know it then, but looking back on my time spent at camp, those 50+ people I met there changed my life, and I’m sure my sister’s too. Now here we are June 2016 and my sister and I just got back from our first ever HD Convention experience. This year’s was in Baltimore, Maryland and it is the HDSA’s 31st convention. We met up with some old friends from camp and met so many members of the NYA(National Youth Alliance). There were 100 youth there and you would think that meeting so many new people would be terrifying, but the truth is, is that we all fit together perfectly. We are going through the same struggles, so it is not hard to start up a conversation with anyone at these types of events. We are family.
Convention was a bit different than camp. It is more educational and informational rather than sitting and sharing your story, although you do have time to share your experience with HD. This was an amazing opportunity and it couldn’t have been possible if it were not for the family Jenna and I made at Camp.
This post goes out to each and every NYA member, every person I met at camp, every person I met at convention, every person I talk to through Facebook/Twitter/Instagram, and every person I have not even met yet that is battling HD. You all have changed who I am. I always leave these events a new and refreshed version of myself and I have all of you to thank for that. Thank you for being there for me when I am down, making me smile, all the laughs and the jokes, all the pictures you post that make my day…each and every one of you is so inspiring. The closeness I feel to the HD Community is unlike any other. I said to myself last night after getting back home from convention, that I don’t know how close other organizations are but I know for a FACT our HD community is stronger and closer than anything I have ever seen. The love and hard work that goes into events like these honestly make my heart smile. I have learned so much from the people I have met. You all have taught me to love harder, come out of my shell, speak my mind, live in the moment and that when I feel I have nowhere to turn, I have all of you. I have grown so much in the past year all because of the HD Community. This is where my heart is, this disease is what keeps me going. I know that the determination that the NYA has, the researchers, the scientists, and the whole community has, we WILL find this cure. I will not ever give up this fight and I know none of you will either
So, THANK YOU! This one goes out to all of you! You’re all so amazing and make me a better person. I cannot wait to be able to see you all again, and to be even more involved in this fight against HD! I LOVE YOU ALL SO MUCH!