NYA Board

The NYA was originally advised by Jean Miller and Dave & Susie Hodgson, along with the Huntington’s Disease Society of America. Today the NYA is run by volunteer members who are dedicated to making the HDSA’s National Youth Alliance known nationally through HDSA’s Chapters and Affiliates, while providing support, education and friendship to young people in the  United States who are impacted by Huntington’s disease.

The NYA Board has had many exciting and new accomplishments since the convention in Jacksonville, FL. Over the past 17 years, the NYA Board has been filled with motivated young adults who are determined to see the alliance strive for greatness. Their goal has been to buckle down and organize their thoughts and put them into action. Board members have built a plan of action for the future to help us grow as an organization and provide the best possible support for all young people impacted by Huntington’s disease in the United States.

Much like HDSA’s Chapters and Affiliates, the NYA board has positions for a Chairman/woman and Co-Chair. We also have a Fundraising Committee, Youth Services & Recruitment Committee, Advocacy Committee, and the Communication Committee.

Meet the Board


MaryAnn Emerick

New York, New York
NYA Member since: 2013
President
 

MaryAan Emerick joined the HDSA Greater NY board in 2012, a year after her mother passed away from HD.  She knew she needed to help but never knew how until she joined the NYA less than two years ago.  MaryAnn loves spreading awarness, however she can, because if people do not know they cannot help. From speaking at education days, talking to medical students, talking to Congress, running races for HD, or talking to anyone that will listen, she makes sure people know what HD is and why it is so important to her.  MaryAnn currently works at the Long Island Alzheimers Foundation, and is going back to school for Social Work

Amanda Butterworth

Wilmington, North Carolina
NYA Member since: 2010
Advocacy Chair
 

Amanda Butterworth graduated from University of Massachusetts Boston with Bachelors in Psychology and Community Studies.  Her mom rpassed away from Huntington’s disease last year. She has been a part of the NYA since 2010, and a Board Member for 4 years. She is currently the Advocacy Chair for the NYA.  Over the past 2 years she has assisted in the organization of over 10 NYA Takeover’s in Washington, DC where the NYA members flew in from across the country to meet with Congress. Amanda’s dedication to the NYA and to advocacy for HD helps all youth across the country to help inspire and motivate them.

Melissa Ryant

Cleveland, Ohio
NYA Member since: 2013
Youth Services & Recruitment Chair
 

Melissa Ryant is a sign language interpreter. She has an Associates Degree in Deaf Interpretive Services. She has been with the NYA since attending HDSA’s National Convention in Jacksonville, Florida in 2013. She is currently the Youth Services & Recruitment Chair for the NYA. Melissa’s mom passed away from HD in 2008 — soon after Melissa tested negative for Huntington’s disease. After reaching out to her local support group, she began to get involved and became more motivated in the HD community. We could not be more thankful for the love and support she provided the NYA community.

Mogan McClane

Pittsburgh, Pennsylvania
NYA Member since: 2012
Advocacy Co-Chair / Fundraising
 

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.

Miranda Spencer

Milford, Michigan
NYA Member since: 2015
Research Chair
 

Miranda has been a member of HDSA for two years and a member of the National Youth Alliance for the past year, since attending the 2015 Dallas Convention.  She is currently a nursing student at Michigan State University and will graduate in December of 2016. Miranda is also on the Michigan Chapter Board as the NYA chair in hopes of getting more local youth involved with the local HDSA Chapter.  This past year Miranda and the local Michigan NYA members met with their Senator to talk to him about the HD Parity Act and she also put together Michigan's first youth track for their education day. Her grandma and her grandma's sister are gene-positive for HD and has many family members that are at risk for HD.

Havanna Lowes

St.Louis, MO
NYA Member since: 2009
Communications Chair
 

Havanna Lowes has been a member of the National Youth Alliance since 2009. Also serving on the St.Louis Chapter Board, Havanna is dedicated to doing everything possible to help those in the HD community. This past year, she travelled to Washington D.C. to help with a NYA Takeover, as well as spoke at three education days in several different states. Her mother is currently gene-positive for Huntington's Disease. Her commitment and enthusiasm to spread awareness helps to inspire other young people to get involved in their communities.

Anna Lunsford

Columbus, Ohio
NYA Member since: 2015
Communications Co-Chair
 

Anna Lunsford's family was involved with HDSA in Michigan when she was young and her father was first diagnosed with Huntington's Disease. As more family members developed the disease, her family stopped talking about it. Anna rediscovered the HD community while going to school at The Ohio State University for her Bachelors in Psychology and Women's, Gender, and Sexuality Studies. She joined the NYA after learning about the organization while attending the first HD youth camp in 2015 and attended her first National Convention in Baltimore, MD in 2016. As graduation approached, she decided she was diving in heart first by advocating in DC and Michigan for the HD Parity Act and receiving her genetic test results the day after convention ended. After testing gene-positive, Anna has devoted her time and energy to encouraging youth to tell their stories and be confident in their path with HD.