Meet Amanda

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.