Resources for Youth to Learn about HD and Connect with Others

Youth Resources

Below are resources available that provide education and support for youth impacted by HD. Click on the toggles to reveal more information about each resource. Please contact us for more resources available to children, teens, and young adults!

What is the National Youth Alliance?

The National Youth Alliance (NYA) is a branch of the Huntington’s Disease Society of America (HDSA) that focuses on supporting and empowering youth who are impacted by Huntington’s disease in some manner, including children of HD families and those with juvenile HD. The group contains children, teens, and young adults ages 9-29 and includes a dedicated team of youth social workers. The NYA encourages youth to get involved in their local HDSA chapters, affiliates, and support groups through education, fundraising, advocacy, and awareness for HD. Created in 2004, the NYA now includes over 500 members and continues to grow. Young people impacted by HD can join the NYA and stay updated on events by visiting the NYA website. HDSA has also put together a playlist of NYA videos on their YouTube channel, where you can learn more about the NYA's work and missions.

 

NYA Day at the HDSA Annual Convention

Every year, the NYA holds an NYA Day before the start of HDSA’s Annual Convention. NYA Day provides youth with opportunities to learn about HD and connect with other youth also impacted by HD. Topics discussed include living in an HD family, HD research updates, fundraising, and advocacy. Scholarships covering convention fees, travel, and hotel costs are available to support youth who need financial assistance. During the COVID-19 pandemic, NYA Days have been held virtually before the start of the convention.

NYA Retreats and Mini-Series Discussions

Throughout the year, the NYA also hosts multiple retreats at different locations across the country, providing young people with the opportunity to stay connected with fellow NYA members. Scholarships are also available to cover travel and hotel costs for retreats. During the COVID-19 pandemic, NYA retreats have been put on hold. However, the NYA is hosting a virtual mini-series on various topics to provide youth impacted by HD with opportunities to connect and learn.

Click HERE to Join the NYA!

What is the Huntington's Disease Youth Organization (HDYO)?HDYO logo, H is green, D is orange, Y is green and in the shape of a person holding their arms out, and O is purple

Founded by Matt Ellison and BJ Viau in 2012, the Huntington’s Disease Youth Organization (HDYO) is a non-profit that aims to provide education and support to young people impacted by HD from around the globe. On their website, they provide educational content and resources for all age groups (including kids, teens, young adults, parents, and professionals). They also host youth camps and conferences around the world for young people impacted by HD, some of which have been in the U.S. Scholarships are available to cover travel and other costs for these events. 

The parent section on their website also provides valuable resources for parents on how to talk about HD with their children. HDYO also developed HDYO Land, a fun and interactive game for young people to learn about HD. In addition to their website, HDYO also has a YouTube channel, which contains interviews with young people about their experiences with HD, updates on HD research, and discussions on various other topics related to HD.

Click HERE to visit HDYO.org

 

Resources to Learn about HD Biology

Below are some additional resources for youth to learn about HD in addition to the NYA and HDYO resources listed above!

HOPES logo
  • Huntington’s Outreach Project for Education at Stanford (HOPES)

    • HOPES covers a wide range of topics, including the science of HD and how to manage HD symptoms. Some particularly relevant resources for youth provided by HOPES are listed below.

      • What is Huntington's Disease? – Video created by HOPES that explains HD using a whiteboard animation.

      • HOPES for Kids – Includes a presentation to introduce genetics to students in grades five through nine and various fun activities!

      • Science of HD – For high school students, young adults, and others who have some background in biology and want to learn more! (includes text and audio versions of articles)

  • HDBuzzHDBuzz logo

    • This site provides updates on Huntington’s disease research written in plain language by scientists! The articles on the site explain recent trials and hot topics in the HD community. HDBuzz also provides a glossary of terms to help you get familiar with HD lingo. If you are interested in learning about the biology of HD at a more advanced level or simply want to keep up-to-date on research and trials, HDBuzz is a great resource.

Fiction and Non-Fiction Books for Children and Teens/Young Adults
  • HD Guides by Age provided by the Scottish Huntington's Association 

  • Children’s BooksHOPES for Kids

    • HOPES for Kids – Includes free children’s books on HD!

    • “Harry needs a hug: A story for children learning to deal with Huntington’s disease” by Emma Terranova

    • “Grandma Has Huntington's Disease, and It's Okay” by Dr. Kelsey M. Finn

  • Teen/Young Adult Books

    • Stories of HOPES – A collection of fiction and non-fiction short stories about HD.

    • The Woman Who Walked into the Sea: Huntington's and the Making of a Genetic Disease by Alice Wexler

      • This non-fiction book describes the history of Huntington’s disease in America through medical and social contexts.

    • Mapping Fate: A Memoir of Family, Risk, and Genetic Research by Alice Wexler

      • This memoir describes Wexler's family journey with Huntington’s disease. Alice Wexler tells of how her mother died of the disease, how she stands a 50-50 chance of inheriting it, and how her sister and father sought to identify the gene for HD.

    • Inside the O’Briens by Lisa Genova

      • This fictional novel explores the dynamics of the O’Brien family after the father, Joe O’Brien, is diagnosed with HD. His children decide whether they would like to live their life “at-risk” or get tested for HD and know their fate.

    • Rules for 50/50 Chances by Kathy McGovern

      • This fictional novel follows the journey of Rose Levenson as she decides whether she would like to go through the testing process for HD once she turns 18.

    • HDYO Books – A list of more books related to HD for young adults.

Resources for Juvenile Huntington's Disease (JHD)

For Parents & Caregivers: Talking with Children about HD

Educating children about HD and having open, honest conversations in the family is important. Without being informed, children may gain false assumptions about HD or seek information from other sources that may be inaccurate. Talking about HD can reduce fears and anxieties about the disease, foster healthier family relationships, and ensure that children are properly informed. Starting conversations early on and engaging in ongoing discussions can help children better adjust to HD in the family and better understand their loved one's HD symptoms. Below are resources to help you initiate and continue conversations with your children depending on their age and/or developmental stage. Gaining appropriate information at any age can be beneficial to children.

  • Informational GuidesWhat is HD? blue speech bubble

    • “Parents” section of HDYO – Includes information on how to introduce and talk with children about HD, young people's experiences finding out about HD, parents' experiences talking to their children about HD, and more. HDYO has also developed an interactive game called "HDYO Land" to help children learn about HD.

    • “Talking With Kids About HD” – An in-depth guide created by HDSA that discusses how to have conversations about HD and JHD with children and family members of any age.

    • “Talking to Children About Huntington’s Disease” – A guide created by HOPES that provides basic guidelines on how to engage in conversations about HD with children.

    • Talking to Kids About Huntington's Disease: A book for people who know children with HD in their family by Dr. Bonnie Hennig-Trestman (a presentation by Dr. Bonnie is also listed below)

  • Videos/Presentations

  • Please see the “Books for Children and Youth” listed above, which can be read with children to initiate conversations about HD.