Huntington's Disease Society of America
My name is Amanda and I’m 25 years old. My mom Barbara has been sick for close to 10 years with Huntington’s disease. She has been living in a nursing home for the past couple of years and a few months ago, she was put on hospice. I’m an only child and my mom was like my other half growing up. I struggle every day with the fact that she is suffering from the disease. It has been a crazy rollercoaster ride over the years and it has really put life into perspective.
I was unaware that there was a Huntington’s Disease Society of America or even a National Youth Alliance, until 7 years ago, when I met people involved, while living in California. I quickly got involved with fundraising in California, and also Massachusetts when I would travel home to take care of my mom. I moved back home to Massachusetts a year ago and decided to join the Massachusetts board for the HDSA. I’m also an avid helper with the National Youth Alliance. I have also spoken at education days and hospitals, to educate youth, and parents about the NYA and HDYO.
I can’t imagine my life without this community and the friends I have made who have become like family. I use to think I was alone in dealing with this disease and now I have friends across the world that have gone dealt with similar issues that I have. By becoming more involved it helped strengthen my relationship with my mom and helped me become a happier and healthier person.