Tiffany Lupton
Tucson,AZ

I am 24 years old and currently reside in Tucson, AZ. I am currently providing counseling services to children and families at a non-profit behavioral health agency in the city. I graduated in 2007 from the University of Arizona with my Bachelor’s degree in psychology and sociology. Soon after, I embarked on a new adventure and moved to Denver, CO, where I graduated with my Master’s degree in counseling psychology in 2009 at the University of Denver. Following graduation, I moved back to Arizona to be closer to my family. My father Bill was diagnosed with Huntington’s nearly 15 years ago when I was a young child. However, I did not learn of the disease until years later during my freshman year of high school. At the time I knew nothing of the disease and I chose to ignore it for quite some time. Eventually, the enormity of what the disease possibly meant for me and my family took over me and I chose to acknowledge my reality. I was at risk, and I did not recognize the implications of what this entailed. I finally decided to become involved with HD so I could be supportive of my dad and work to improve our relationship with each other. I began participating in support groups in the Phoenix and Tucson areas and attended my first convention in Milwaukee, WI. I have participated in research and have followed it religiously, hoping that each experiment is bringing us one step closer to a cure. What I didn't realize was how much my life would change and how HD would come to be a huge part of who I am. Since then I have become dedicated to finding out everything I can about the disease and I have met the most incredible people because of it. I have loved being a part of the NYA and being able to share my experience with others, as I often wish that I would have had a group such as this to confide in when I was younger. I currently have numerous family members who are courageously battling this disease, as well as a younger brother who is gene negative and a sister who remains at risk. I continue to keep the hope alive each and everyday and pray that we will soon find a cure. To all of my HD friends, you are my family, and together we will make this the last generation with HD.

Amanda Butterworth
 29 Palms, CA

I’m 24 years old, and I’m currently living in California on a military base. However, I grew up in Massachusetts and plan to move back there in a year. I’m a graduate of University of Massachusetts Boston, where I studied psychology and community studies. I found out my mom had Huntington’s disease when I was 18 years old, but my mom had been showing symptoms since I was in early high school. I’m currently still at risk for this disease and plan on testing in the near future. I was unaware that there was a Huntington’s disease society or even a National Youth Alliance, until 4 years ago after moving to California. I quickly got involved with fundraising in California/Massachusetts and ended up getting more involved with the HD community. I can’t imagine my life without this community and the friends I have made. I use to think I was alone in dealing with this disease, and now I have friends across the world that I can relate to. These people have become like family to me and understand me better than most of my friends I’ve known since I was little. By becoming more involved, it helped strengthen my relationship with my mom and helped me become a happier and healthier person. I encourage anyone who is hesitant of joining this alliance, to at least try it out and see what it is really about. Everyone should have a safe place to go to connect to friends without feeling judged; no one should be alone when coping with disease.

Seth Rotberg

Amherst, MA