Meet the Board
President of NYA
I am 22 years old and recently graduated from the University of Massachusetts Amherst with a degree in sport management and a minor in economics. I begin a 10 month program in August of 2013 called City Year Boston where I will be working with inner city Boston students and keep them on track to graduate. I really enjoy working with the community and giving back any way I can.
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.
In my spare time I like to hang out with my friends, family, and especially my three year old dog, Jake. I also enjoy running and plan on running a half-marathon in September. But, what I truly enjoy is making an impact in society and trying to make a difference in life. I will continue to raise money and awareness for HD and believe that we are all in this together!
Vice President of NYA
I am a recent college graduate from The University of New Mexico. I reside in Albuquerque, where the sun shines and green chile grows! I am 23 years old, and have been involved in some way with HD my entire life. My grandfather Walter Mabry, had HD and passed in 2000. My father Edwin Mabry, was diagnosed in 2001, and is still going strong fighting the good fight. And my older brother Bryan Mabry was diagnosed with JHD in 2009. I was recently tested negative and feel that being involved with HDSA and NYA is my life’s mission. I am the President of the New Mexico Affiliate along with being a Board member of the National Youth Alliance. Both organizations have helped me learn and grow from first being involved in a local support group to being the voice for New Mexican’s living each day with HD/JHD. Being a part of the National Youth Alliance has opened my eyes to not feeling that I am alone. I have made lifelong friendships that have gotten stronger throughout the years, NYA members have become my family. The NYA helps me get through the days that I feel are going to be too difficult to deal with by myself. Our lives have been dedicated to helping youth’s affected by HD/JHD cope with the cards we have been dealt. We are not alone here, we are all family…
Director of Social Media/Communications
Hey there!! My name is Melissa Ryant and I am 25 years old. I'm from Cleveland Ohio and currently work as a sign language interpreter. I just recently became involved with the NYA by attending my first national conference in Jacksonville 2013. It was truly an amazing experience and I am so thankful that I was able to attend! I have been involved in my local chapter for about 2 years.
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.
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.
Social Media Coordinator
Myrtle Beach, SC
Logistics for NYA
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.