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.
For questions, please contact the NYA Board via email: memerick@hdsa.org
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.
For questions, please contact the NYA Board via email: memerick@hdsa.org
Meet the Board
Ashley Pesi
In 2019, Ashley became the Fundraising Chair. She has been called driven and passionate for the cause. Her mother was diganosed with Huntington's disease and Ashley tested positive as well. She wants to continue providing outreach for the NYA as she wants this to be there for her daughter when she gets older.
“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.”
Katie Weikum
Katie joined the NYA Board in 2020 and is a member of HDSA's Minnesota Chapter. Katie is passionate to provide more resources to the younger generation as she did not have many resources when she was growing up.
“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
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
Since 2016, Ali has been involved with HDSA's National Youth Alliance and has been apart of the NYA Board since 2017.