National Youth Alliance

Our Mission

HDSA’s National Youth Alliance (NYA) motivates youth to get involved in their local HDSA Chapters, Affiliates, and Support Groups in efforts through education, fundraising, advocacy and awareness for Huntington's disease. The NYA is a collection of children, teens and young adults from across the country.

We are made up of young women and men ages 9-29 that are impacted by Huntington’s. The NYA is dedicated to our vision of being the last generation with Huntington’s disease and as an essential part of the future of HDSA; we pride ourselves on our ability to persevere throughout the years. Since 2004, NYA has grown from a small group of kids to over 500 members!

It is our mission to not only support young people within the HD community, but also inspire the youth of HDSA to get involved in the battle against HD and be proactive in this fight. We are dedicated to making ours the last generation with Huntington’s disease.

What We Do

The NYA provides a wide variety of ways for the youth of HDSA to become motivated:

  • By increasing the amount of local youth support groups nationwide we are able to ensure our members are getting the support they need locally
  • Educating the youth at Education Days, Symposiums and Conferences locally as well as on the national level at NYA Day and Convention
  • Advocacy training and proactive efforts from meetings with the Senate and Congress at home to Capitol Hill in Washington D.C.
  • Fundraising for our NYA Convention Scholarship Fund
  • Providing updates on NYA activities, initiatives, and fundraising efforts in the We Are the NYA newsletter
  • Sharing the experiences and observations of young people from all walks of life affected by Huntington’s disease through our website’s Faces of NYA* section.
    * Under development

How You Can Help

Becoming an active member is simple. What do you like to do? How do you see yourself getting involved? Would you make a great speaker? Become an important part of your HDSA Chapter or Affiliate and speak up for the NYA at their events. Do you think you would be good at fundraising, why not set up a Hearts for Huntington’s event at your school? Want to make a difference for everyone affected by Huntington's, join our Advocacy Committee. There is something for everyone here at the NYA! You could also try any of these options to get involved:

  • Write a story for Faces of NYA - a section that features personal accounts of dealing with HD that will be featured in our new site - or We Are the NYA Newsletter
  • Recruit your friends and family members
  • Help us plan for NYA Day and convention
  • Join an NYA Committee: NYA Day & Convention Committee / Research Committee / Advocacy Committee Fundraising Committee / Communications Committee / NYA Youth Services & Recruitment Committee

The HDSA National Convention & NYA Day

HDSA’s National Convention is held each year at a different location across the country.  It is an event that brings together people for support, education, awareness and research. Huntington's disease (HD) researchers, clinicians, and members of the HD community from around the country convene to participate.

The NYA hosts our own day the Thursday just before convention begins on Friday. On this day we hold team building exercises to develop a bond between members, sharing sessions to learn each others HD stories, and have guest speakers teach our members about Research, Advocacy, & Fundraising.

NYA Day is when NYA members from far and near come together and learn more about what the NYA is and what we are doing in the fight against Huntington’s disease. We teach our members about research, advocacy, fundraising and how to become more involved with the NYA and HD communities. Group youth sharing sessions are available at NYA Day as well as throughout the weekend. It is a time for youth to meet other youth across the country and world who are coping with this disease.  The NYA day is a day filled with support, education and fun activities. By joining the NYA you make yourself eligible to submit an application to receive a scholarship. Scholarships applications are due each year in April and the convention is held every year in June. Over the last ten years there have been over 200 scholarships provided to members of the NYA. 

NYA Day is planned by the volunteers of the NYA Day & Convention Committee. Between conventions, these members work tirelessly to ensure a high quality program for youth’s who are attending convention. From the month’s of January to June, the NYA Day & Convention Committee comes together to work collaboratively with the HDSA and the Convention Planning Committee. They take feedback from the previous year, reach out to members and plan the entire weekends youth events, from NYA Day to the night activity, the NYA Talent Show as well as all youth sessions found at convention.

Join Us!

To apply for membership to HDSA’s National Youth Alliance, please complete this form.

Are you a member or involved in an HDSA Chapter or Affiliate?

In a few words, tell us why you're interested in joining.

Is okay for us to share your information with Chapters/Affiliates and other members/committees?

Participate in a Committee!

Already an NYA Member? Would you like to become more involved in NYA activities? Great!

Yes! I’m an NYA Member and I’m interested in joining the following Committee(s):

In a few words, tell us about you're interest in joining your chosen committee(s).

Is okay for us to share your information with Chapters/Affiliates and other members/committees?

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