If anyone would have told me seven years ago that I would be where I am today I would have laughed. I never ever thought that I would have the type of passion I do for the community I have found through such a saddening and horrible disease, Huntington’s Disease. But here I am, five years since my very first HD Team Hope Walk, and loving it.
Seven years ago, my family had no idea that there were events for Huntington’s Disease. In 2012, we joined our first Team Hope Walk at Belmont Lake State Park on Long Island in New York, fifteen minutes away from my (then) house. There was a walk the year before but we had not known about it yet until a postcard advertising the event came in the mail in 2012. Before the day of our first walk, I thought I was alone. I thought my family had the worst luck of them all, and that Huntington’s Disease was something that would only ever affect my mom, my family and I. After that walk, my eyes were open. I realized that on Long Island alone, a tiny island off New York State, had a ton of people affected whether that meant at-risk, diagnosed or just wanting to help and show support. It made me reazlize that if a tiny island had this many affected people there was no way I was alone, I just had to find other people my age. It was then that I knew I would dedicate each and every year to this walk. So, every year since then, I fundraise, I raise awareness online, and show up to this walk. Each year this walk gets bigger and bigger. This past walk, September 2016, we had 250 participants and raised over $37,000! I am so proud of Long Island for this. We were even featured in the HDSA’s 2016 Year in Review which is sent out to all that are subscribed to their newsletter through email.
Seven years ago, I wouldn’t have believed you if you told me I was going to find what really makes me happy in life. I found my passion for giving advice and helping people the best that I can. I learned so much about myself that I never really knew. I know what I want from life, and that is to be a social worker for people dealing with genetic or chronic illnesses(I’d of course branch out since that’s so specific) but this is where my heart is. I know how it feels to feel alone and scared, I want to be someone’s comfort in this messed up disease(and other diseases too). This community has shown me love, friendship, compassion, and support all at once. I never thought that you can make lifelong friends and family after knowing a person for 24 hours. I never in my life thought that “charity work” could be so fun and so rewarding. As a typical youngster, I was so opposed to dedicating my time to “work” like soup kitchens, clothing drives or fundraising. But what I learned after my first HD event was that not only is it fun, it makes you feel so so SO good. Knowing that you are making a difference and helping a community with funding events, research and resources is just such a motivational and fueling thing. Advocating and raising awareness for those that cannot and not only the disease but the amazing organizations like HDYO and the NYA make me so happy.
Now, I have attended five LI Team Hope Walks, two HD Youth Camps, one National Convention, and plan on doing so much more in 2017! I am fueled by the positivity within this community, by the amazing young adults and volunteers I’ve met at camps and convention, by the people I’ve met online on HD pages, and by my family. you all are the reason I do what I do. I may not have done much in terms of raising so much money, or starting my own event, but I know that the awareness I show has informed more people than I had ever imagined. You all are the reason I write, and am so open with this part of my life. Through this blog, so many more people have reached out to me and nothing makes me happier than people asking me about HD or how to get involved or just saying they loved reading something I wrote. Thank you, HD community for all the hope and support, and thank you readers who may not be apart of the HD community but understand this part of my life and support me through all of its craziness!