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Hi my name is Amanda,
I'm on the board for the National Youth Alliance (NYA) and I handle most of the behind the scene stuff that has to do with Facebook and the website. I have been helping out with the NYA for about 3 years now. I'm 26 years old and live in Massachusetts. I'm also on the board for the Massachusetts chapter for the HDSA. I talk to parents at educational days and hospitals in Massachusetts to help bring awareness to the NYA and Huntington's Disease Youth Organization (HDYO). I try to help educate parents on how to talk to their children regarding HD. The NYA and HDYO help to bring a positive light to youth through the hardships that come with growing up in a family with HD.
My mom has been sick with the disease for around 10 years. She is currently in a nursing home in Massachusetts and has been there for a few years. I'm an only child and my parents are divorced, so a lot of the responsibilities of taking care of my mom have fallen on my shoulders over the years. Until I found out about the NYA and HDSA, I had no outlet or anyone to talk to about what was going on with my mom. My mom and I have had our ups and downs over the years, but being a part of the NYA has helped strengthen my bond with her and has made me a stronger more positive person. I now have a family of people across the world that have experienced/are going through similar stories to me. Most of these people understand me better than my friends I've grown up with.
One of the best decisions I made in my life was to become a part of the NYA. I truly believe this generation of youth is going to make huge strides in bringing a positive awareness to HD and they are going to change the way people look and deal with this disease.