National Youth Alliance Board

Chair

I am 21 years old from Livermore, California and am a fourth year student at U.C. Berkeley majoring in Molecu-lar and Cellular Biology with an emphasis in Neurobiology. When I was in 8th grade my mother told me that she had tested positive for Huntington's disease. At the time I had no idea what the disease was and what to expect. Soon after telling me my parents started taking me to our local Northern California HDSA Chapter events and that was really my first exposure to HD and where I learned what the disease was. Since I was (and still am) really into biology, I then became really interested in understanding what the disease was and how it worked biologically. I did several school projects and presentations on HD and kept going to Chapter events and helping people understand biologically what was going on. A couple of years ago our chapter president asked me if I would like to join our Chapter Board so I have been pretty involved with that for a while and have been co-chairing our local NYA group with Sherry Roberson. Almost two years ago I met Dr. Jan Nolta at a Chapter HDSA event and told her I would be interested in working on HD in her lab. I knew I loved biology and chose to work in neurobiology because I wanted to do something for HD. I have been working for Jan's lab in the Institute for Regenerative Cures (which is a nice way of saying stem cells) for over a year now trying to find a stem cell therapy/cure for Huntington's disease. I have not tested yet so I am still at risk. I don't feel like it is an answer I need to have right now and would rather just focus on my mother and uncle who are both sick with HD. My father and I are my mother's primary caregivers. I come home from school every weekend to help take care of her and just be with her while I still can.

Co-Chair
Staci (Nicholas) Cushenbery
stacicushenbery@hotmail.com

I'm a 26 year old, married to Jerry and we have two kids-Makayla is 4 1/2 and Jaylon (boy) is 2 1/2, I'm an currently out of school where I got my MSW and decided to go to work in the oilfield because the business has always been a big thing for my dad so I just fell into it as well. I love my job, but it is very demanding, on call 24/7, 365. My mom had HD, first in the family to be diagnosed, her dad was found to carry the gene but is in the gray area, 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 apart 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, while I'm not able to be a voice for the youth as well as I used to be, I can be a voice for those who are in their 20s. My favorite thing to do is advocate and support others, I love being at the events and being involved but we don't have any-thing really in my area which is why I love convention. It gives me an opportunity to shine at what I love to do.

Fundraising Chair
BJ Viau
hoopathon@yahoo.com

I am 23 years old and I am at risk. My Mom Debbie was diagnosed with HD 14 years ago. At the time I knew nothing about the disease, but right away I knew I wanted to make a difference. My parents started taking us to fundraising events and this led to my family starting our own Hoopathon. A Hoopathon is a basketball event with a carnival twist that has been going on for the past thirteen years in Minnesota (www.hoopathon.com). I have chosen not to get tested for HD and will continue to focus on my Mm and my friends who are currently battling the disease. I have chosen to dedicate my life to HD by raising awareness, raising funds, supporting others and most recently taking a job at Lundbeck Inc. who has a treatment for HD. I currently live in Chicago and I enjoy spending my time playing sports, traveling to new places, attending HDSA fundraisers, and meeting new people. The NYA has a lot of potential and I am excited to be a part of the board. Please send me a message to introduce yourself and I am always free to take questions or comments about anything! hoopathon@yahoo.com

Advocacy Chair
Karla Gurganus
K_paige2@yahoo.com

I am 23 years old and from a rural community in eastern NC called Cypress Creek. I graduated from the University of NC - Wilmington with my Bachelor's in Business Administration in December 09 and am currently working in Real Estate Sales. I am in a committed relationship with my boyfriend Bradley who knew absolutely nothing about HD when we met. As a result I have experience with trying to educate a loved one about how tragic this disease is and how important our work as a committee is in finding a cure. HD comes from my dad's side. My dad was one of the patients that refused to be tested or treated with any kind of medication. He finally consented to have the neurological exam in 2002 and the doctor told him what we already knew, that he was symptomatic. After that he chose not to have the blood work, but instead to handle the disease on his own. After a very long year my dad committed suicide in May 2003. I attended my first convention in 2006 in Milwaukee, WI and was invited by Staci Nicholas to get involved with the NYA. I immediately saw the friendships and support in this group and knew I needed to be a part of it. I learned that even when I felt so alone, there were people my age dealing with the same problems. My knowledge of HD and how it could change my life improved so much over that weekend I decided to test for the gene in the fall of 2006. By the grace of God I tested gene negative for Huntington's. The NYA has given me the ability to advocate and create awareness of this disease in order to find a cure and change the future for all of those gene positive and still at-risk. As a committee I know we will pour our heart and soul into making a difference and we hope you will do the same!

Secretary

Tiffany Lupton
mstiffanylupton@gmail.com

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.

NYA Advisors

Hodgson, Dave
Email: SpikeTDog@Softhome.net
Cell: 630-386-3928

Oto, Misty

Email: roto1@cox.net

HDSA NYA Advisors

Perez, Mynelly
Email: mperez@hdsa.org
Phone: 1-800-345-4372 Extension 214

Taubman, Fred

Email: ftaubman@hdsa.org

Phone: 1-800-345-4372 Extension 229