Meet the committee behind the NYA
Staci (Nicholas) Cushenbery
I'm 27 years old, married to Jerry and we have three kids-Makayla is 6, Jay is 4, Libby is 7 months. I graduated from college with my MSW. I decided to go to work in the oilfield, because the business has always been a big thing for my dad and I just fell into too. I love my job, love being in charge of things and being one of few females in a male dominated field. My mom was the first in her family to be diagnosed with HD, her dad was found to carry the gene but is in the gray area. My mom passed away in 2006 after 10-12 yrs of a battle, I tested negative in 2005. I live in Kansas, small town near Wichita...we currently have nothing in our area, so for me the HDSA conventions has always been my one time a year to shine and do all that I can for HD and the youth, other than my support through-out the year. I've been a part of the NYA since its inception. For me, I wanted to be on the Board again because this gives me a chance to help and support throughout the whole year, I also feel that while I'm getting older, the youth aren't quite there yet to completely not need my input. I'm not able to be a voice for the youth as well as I used to be, but I can be a voice for those who are in their 20s. I feel like HD was put in my life for a reason and that I was chosen to always be a voice for those who don’t have one, HDSA and NYA gives me an opportunity to shine at what I love to do.
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.
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.
I am 21 years old and I am currently a junior, sports management major at UMass Amherst. My mom has been diagnosed with Huntington's Disease and ever since then I have been raising money and awareness for her. I am a current board member for the MA Chapter Board for HD and I run a 3-on-3 basketball charity event each year called Hoops for Huntington's. All of my friends and close family members support my mom and the rest of my family and are always willing to help out. Although being the youngest member of the NYA Committee, I believe that I bring a lot to the table. If anyone has any questions or just wants to chat do not hesistate to email me at firstname.lastname@example.org. I look forward to meeting more NYA members and hopefully we will find a cure soon enough for HD!
Our mission statement
To provide a support network for youth coping with Huntington's Disease in their lives.
To educated youth and families dealing with this disease.
To motivate youth to get involved in raising awareness and finding a cure.
What the NYA offers
Quarterly NYA Newsletter with updates on HDSA events and NYA Activities
Educational opportunities about HD
Opportunities to help educate others & advocate for HD
An opportunity to apply for an HDSA National Convention Scholarship
Youth support from around the country
New friends and great experiences!