Meet the Board
NYA Member since: 2011
NYA Position: President/Advocacy/Fundraising/Social Media/Outreach
My family has been affected by HD my whole life. My grandfather was ill with the disease as I was a child, and when I was 10 he passed away. After I turned 11, my father was diagnosed gene positive for HD at the age of 35. When I was 19, my only sibling, my brother was diagnosed with JHD at the age of 22. I became involed with HDSA in 2009 and with NYA in 2011 when I attended my first NYA Day and National Convention. I have spent that last few years motivating the state of NM to also become involed with HDSA as well as working on the NYA Board to get more young people involved with the NYA. I am an HD caregiver, advocate, fundraiser, clinical diplomat, and part of HDSA's field leadership. I have dedicated my purpose to all things HD, and seeing changes happening for a future free of HD.
NYA Member Since: 2011
NYA Position: NYA Day Committee/Advocacy/Fundraising/Outreach
HD has been a part of my life ever since I was a freshman in high school when my mom was diagnosed with the disease. At that time I did not know much about the disease and did not start to take action until I was a freshman in college and created a 3-on-3 basketball charity event called Hoops for Huntington’s. From that point on, I began to get more involved with HD by joining the Massachusetts Chapter Board and the National Youth Alliance Committee Board. By getting myself more involved with HD and these different boards, it allowed me to connect with other people who could relate to my story. It felt great to learn that I was not alone and that there are people not only across the U.S. but in the world whose affected one way or another by HD. In order to make a change we need to act and go out there and a make a difference. Whether that means to run a fundraiser or even just volunteer at an event, all the little things add up.
NYA Member Since: 2001
NYA Position: Advocacy/Social Media/Outreach
NYA Member Since: 2012
NYA Position: Advocacy/Fundraising/NYA Day Committee/Outreach
My aunt was diagnosed with HD in 1999. She passed April 15, 2010, leaving my two cousins and four grandchildren who have not been tested and are all (6) at risk. I am not at risk and have invested my time into those who need it more than I. I always had an odd relationship with my aunt. I always felt like I was an afterthought when she would “babysit” me. She always seemed to be somewhere else mentally. I would insist to my parents that she didn’t like me, or she was mean to me. Being a young child, I never really put enough thought into why she was acting that way, and my parents never really put much thought in to it either. Until 1999, when she was diagnosed, it was devastating for us, but we all had answers we were looking for. In 2008 my family and I started Barbara Lee’s Fast Track to a Cure for Huntington’s Disease, to honor my aunt and her struggles with HD. Fast Track is a different kind of fundraising event. I have incorporated the aspects of an autocross and a fundraiser and have fused them together to grow one of the nation’s largest fundraising autocrosses. To learn more about the event, go to http://www.fasttrackpgh.com. Starting this autocross has been the most life altering experiences in my life. It has introduced me to some of the bravest people that I have met. Knowing that these people aren’t receiving the best care that they can is upsetting because they more than anyone else I know need it.
NYA Member Since: 2013
NYA Position: Activities Coordinator/NYA Day Committee/Outreach
My mother was sick with Huntington's and became symptomatic when I was around 3 years old. It's safe to say that HD became my whole life. When I was 8 I began taking care of my mom until I was 11, and she was moved into a nursing home. Sadly, my mom passed away at the age of 59 when I was 20. It wasn't until a few more years later that I learned about HDSA and became involved. I decided to get tested about two years ago. My results are that I am gene negative. Experiencing the strange sensation of survivor's guilt was enough to make me reach out to support groups. I still have a lot of family that has tested positive which was difficult to deal with.
NYA Position: NYA Day Committee/Fundraising
Since I was a child the realities of Huntington’s Disease have been a part of my life. Growing up in a family affected by HD is demanding, but being able to be a part of an organization like the NYA has made it easier. I was first introduced to the HDSA through the 1999 National Convention in Washington D.C. and since then I have grown up in the HDSA. I have made strides to help advance the HD cause by representing the NYA at the 2011 HD World Congress in Melbourne Australia as well as on the HDSA Los Angeles Board. The NYA is my extended family and I always look forward to seeing everyone anytime I am able to. I hold a BA in Political Science and I finish my Masters of Public Administration this winter, in my free time I play a lot of tennis and I enjoy hanging out with my family and friends.
NYA Position: NYA Day Committee
Hello HD Family!!! My name is Tiffany Lupton-Stegall and I'm 27 years old and live in Tucson, AZ with my fiance and beagle :) I have my Master's degree in Counseling Psychology and I've worked for the past four years as a child and family therapist at a local non- profit agency. I am currently training to compete in the upcoming New York City Marathon on November 3, 2013, in order to raise awareness for the Huntington's Disease community. I am honored and excited to be one of seven runners whom have been selected to compete on behalf of HDSA!!! What an incredible opportunity to raise awareness for our HD families!!!! This is an incredibly personal journey for me, as I come from a family afflicted with HD. My father Bill is gene positive and has been courageously battling this disease for years. He fights the good fight each and every day, and he never gives up. He is truly my HD hero. I have several other family members fighting the disease as well, and others who are at risk. Dad and I became involved with the HD community almost 10 years ago when we attended our first national convention together. Talk about a truly moving and life changing experience! After meeting so many incredible new friends and relating to their situations and stories , we quickly learned that we were not alone, but were now part of the greater HD family. Needless to say, we were hooked, and we continue look forward to reuniting with our friends each year. We really do have the most incredible bond, and HD has brought us all closer together. I have also been involved with the National Youth Alliance for the past 9 years and am a long term member of the committee. I'm extremely proud and honored to be representing our youth in NYC. When I first learned the news that I'd been selected to compete in the marathon, I could not think of a better way to face HD then to run my heart out for 26.2- yes, 26,.2 miles and make each and every step count. Many of you know that I'm a long distance runner and running is in my blood. It is a very huge part of who I am. Living in Arizona, I am up at 5 am almost every morning, and I enjoy nothing more than collecting my thoughts as I run through the desert and watch the sun rise. It is where I feel most free, and it is with each step and through all the sweat and pain that I think about finding a cure for HD.
My family is just one of many who are afflicted with this disease. I'm running for my Dad. I'm running for me. I'm running for my friends and family who are battling this disease. I'm running for those who can't. I'm an HD WARRIOR and each step I take is one step closer to finding the cure.
Myrtle Beach, SC
NYA Member Since: 2013