Amanda Butterworth

Hi NYA members, 

For those of you who don’t know me, my name is Amanda. I’m originally from Massachusetts, however, I live in NC now.  Two years ago, my mom passed away from Huntington’s Disease. I’m currently on the board as an Advocacy advisor for the NYA, and have been on the board for 7 years. I helped put together the original NYA takeovers in DC in 2014, with Morgan, and since then have been able to organize many more takeovers over the years.  I have made it my mission to help educate NYA members and help them raise awareness not only to their Representatives in their own states but in their everyday lives. It has been rewarding to talk to Congress with so many NYA members, and see the SSA guidelines get updated after so many years of hitting a brick wall.  

When HD first impacted my life, I was in high school. My grandmother passed away from HD at a young age, so I wasn’t truly aware of what HD was at the time. In the beginning, it was small changes in my mom, such as her being depressed. When I was 19 my mom told, me she had been diagnosed with HD. I’m an only child, and my parents are divorced, so a lot of responsibility fell on my shoulders, over the next few years. My mom had been a full-time therapist for over 25 years and had a true passion for helping people with mental health issues. When she was diagnosed and eventually lost her license, it took a lot of her dignity and made her really depressed. It was hard for to accept that she needed help, and even harder to go from being the responsible caregiver for me to allowing me to help her. This was a daily struggle, as I was trying to balance college as a full-time student and making sure my mom was ok. Eventually, my mom ended up in an assisted living and from there a nursing home. It was too difficult to manage full-time care for her at home since my uncle and I both were working full time. The most important thing I learned from balancing so many stressors, was to try not to take on too much at once. I realized it was ok if I didn’t graduate in 4 years from college, and I tried to not compare myself to other young adults my age, who only had college, or jobs to worry about.   

  It was an up and down roller coaster throughout the years, but the one thing my mom taught me was to live life to the fullest. To take time every day to be appreciative the small things, most other people often overlook. I became a better person, to not only myself, but to everyone around me. Life is too short and being in this community reminds me that daily.    Being able to share my story, and help remind others that they aren’t the only ones going through these problems, has also helped me with my own struggles. It helps me remember we aren’t alone in this battle against HD. Every year the NYA gets bigger and bigger. We are fighting back and in full force and every day come closer to making it to the day when people have to ask “What was Huntington’s Disease?”