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.
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
Miranda Spencer
Chair
Miranda has been a member of the HDSA, and a member of the National Youth Alliance since attending the 2015 Dallas Convention. She graduated from Michigan State University in 2016 with a Bachelors in Nursing and currently works as an RN at Henry Ford Detroit in the Operating Room. Miranda has been on the NYA Board for four years originally as the Research Chair, and now as of 2020, she now serves as the NYA Chair. Miranda has had the opportunity to speak at multiple education days, national convention, has spoken to senators to advocate for the HD Parity Act, and has run the New York City and Chicago Marathon’s in support of HD. Her grandma and her grandma's sister and brother, along with her aunt are gene-positive for HD and has many family members that are still at risk for HD.“NYA gives you the feeling that you are not alone and it allows you to talk to people that understand what you are going through."
Ashley Pesi
Fundraising Chair
“I accept my HD. The NYA has helped me with the support and they have become family to me. The feelings that you are feeling are okay. The NYA knows how you feel. We are a big family and take the leap with us.”
Jessica Fitzpatrick
Advocacy & Communications Chair
“Find your HD Ohana (family) and lean on them. The world of HD can feel very isolating, but you are not alone. We have the benefit of living in a world where you can connect with others with a simple click of a mouse or the swipe of your finger.”
Katie Weikum
Regional Leads
“The NYA has been a life changing community for me. I have met some of my best friends and biggest support systems by attending retreats."
Gia Mannone
Youth Services & Recruitment
Gia is a long time member of the NYA. She has spoken at HDSA National Conventions, Educations Days, NYA Retreats, and Team Hope Walks. Gia and her sister Jenna are at risk for Huntington's disease, their mother passed away due to complications from HD. “You are stronger than you think. And if you are afraid to jump right in and get involved, you have a whole family and community of people who are willing to help you acclimate and who are waiting to take you in! You will make friends, you will be able to vent. You will feel a connection with this community like no other."
Ali Kruger
Research Chair