Meet the Board

 


 

Seth Rotberg

President of NYA

Natick, MA

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!


Angela Mabry

Vice President of NYA

Albuquerque, NM

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…


 

Amanda Butterworth

Director of Social Media/Communications

Concord, MA

I'm 26 years old and live in Massachusetts and I am on the board for the Massachusetts Chapter for HDSA as well as a member of the National Youth Alliance committee for approximately 3 years.  I talk to parents at educational days and hospitals in Massachusetts to help bring awareness to the NYA and Huntington's Disease Youth Organization(HDYO).  I try to help educate parents on how to talk to their children regarding HD.  The NYA and HDYO help to bring a positive light to help youth through the hardships, that come with growing up in a family with HD. 
My mom has been sick with HD for around 10 years.  She is currently in a nursing home in Massachusetts and has been there for a few years.  I am an only child and my parents are divorced.  So a lot of the responsibilities of taking care of my mom has fallen on my shoulders over the years.  Until I found out about the NYA and HDSA I had no outlet or anyone to talk to about what was going on with my mom and in my family.  Especially because there was no family members reaching out to help me understand the disease better.   My mom and I have had our ups and downs over the years, but being a part of the NYA has helped strengthen my bond with her and has made me a stronger and more positive person.  I now have a family of people across the world who have experienced and are going through similar situations as me who I am able to lean on. Most of these people understand me better than my friends I've grown up with.
One of the best decisions I made in my life was to become apart of the NYA.  I truly believe this generation of youth is going to make huge strides in bringing a positive awareness to HD and they are going to change the way people look and deal with this disease.

Melissa Ryant

Planning Coordinator

Cleveland, OH

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.

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. 
I am so excited to be a part of NYA! I am working with community outreach in hopes that I can reach others to let them know that they are not alone! The people I have met have truly changed my life for the better.

 


David Tovar

Program Assistant

Oxnard, CA

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.


Tiffany Lupton-Stegall

Program Assistant

Tucson, AZ

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.


Kaitlin Klarer

Activities Coordinator

Dallas, TX

 
My name is Kaitlin Klarer and I am the activities coordinator for the HDSA National Youth Alliance. I am 23 years old and live in Dallas TX where I attend meetings for the Greater North Texas Affiliate. My father is involved with the Kentucky Chapter for HDSA. My mother passed away from HD three years ago and I am currently at risk. I became involved with the NYA after my first attendance to the HDSA National Convention's NYA Day. Here, for the first time, I met other young people who knew what it was like to have HD in their family. I felt at home immediately and wanted to get involved.
 
  

Sarah Boulavsky

Social Media Coordinator

Myrtle Beach, SC

 
I am 20 years old and attend Coastal Carolina University in Conway, South Carolina. I will be graduating early in December with a Degree in Biology and a specialization in Pre-med. Huntington's Disease has been apart of my life since the day I can remember. I grew up seeing the disease progress in my grandma, and could never quite grasp the idea of what was happening to her and why these symptoms were occurring. Huntington's eventually took her away in 2006. My parents had always told us that my mom was at risk, but we never thought of it actually happening because we were too young to understand the concept. Finally, in 6th grade, my mom told us that she had been diagnosed with Huntington's disease. I didn't have friends to talk to about it, because I decided that I would not want them to know, and to think that any out of the ordinary thing that my mom did, was caused by Huntington's.  This was extremely hard  because being so young and defiant, I went into denial and hated everything that was happening. There were some rough times, and our relationship was strained, because I just couldn't accept that this would be happening. As I got older it got better, but I still had a part of me that felt missing. I went to my first HDSA convention this year in 2013, and my thought process took a complete 360. NYA reached out and brought me in as their own. I had never connected with anyone else, especially people my own age, that were going through the same situation. For once, I didn't feel alone, and actually felt a part of something. My mom is currently in 2 trial's and living life to the fullest while she can. Even though I have just began in this organization, this is not the beginning. I have a lifelong HD family, and can not wait to begin this journey in sharing with the HD community, that you are NOT alone.

 


Morgan McLane

Logistics for NYA

pITTSBURGH, pa

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.