Resources for Youth to Learn about HD and Connect with Others

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. 

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 connect with fellow NYA members. The NYA covers the transportation and hotel costs for participants. 

Click HERE to Join the NYA!

What is the Huntington's Disease Youth Organization (HDYO)?

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 Download the "What is HDYO" Brochure

Click HERE to Visit HDYO.org

What is HDYO's International Young Person Congress?

HDYO's International Young Person Congress is two days filled with sensational speakers, personal stories, shared experiences, educational sessions, and research updates from leading pharmaceutical companies and professionals. This event is open to all HD community members: family and professional. For families, there is no cost for attending. Professionals are asked to pay a small fee when registering. More information can be found here. HDYO plans to hold the International Congress every other year.

The next Congress will be held March 14-16, 2025, in Prague, Czech Republic!

Click here for more information!

What is HDYO's Young Person Camp?

HDYO is excited to announce its 6th North American Young Person Camp on August 11-15, 2024, at Camp St Charles in Maryland.

HDYO's camp offers young people the chance to meet others impacted by HD while also learning about the disease and how to cope with it. The camp provides educational workshops and opportunities for young people to share their stories with others who have similar experiences. The camp also has many fun on-site activities, including swimming, rock climbing, hiking, and archery.

Goal - HDYO aims for young people (age 18-25 with some flexibility) attending camp to benefit by feeling less isolated and more supported in addition to coming away from camp with an improved understanding of HD and strong peer connections with other young people in similar situations. There will also be an experienced HD team of professionals and volunteers on-site to support young people at all times. HDYO has an exceptional record of holding amazing camps for young people impacted by HD. 

Camp is free for young people to attend! Please sign up below!

Click here for more information!

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!

• 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)

• HDBuzz

  • 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 want to keep up-to-date on research and trials, HDBuzz is a great resource.

• Huntington's Disease Youth Organization (HDYO)

  • The Huntington's Disease Youth Organization (HDYO) provides various resources and guides to explain the biology of HD to children and adults of all ages.

    Click HERE to Download HDYO's "What is HD?" Brochure

Fiction and Non-Fiction Books for Children and Teens/Young Adults

• HD Guides by Age provided by the Scottish Huntington's Association 

• Children’s Books

  • 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)

• Handbooks/Resource Guides

  • Overview of JHD by HDSA – Provides a brief overview of JHD symptoms, onset, progression, and treatment as well as links to additional resources and publications.

  • “JHD” section of HDYO – Provides information on the basics of JHD, living in a family with JHD, talking about JHD with children, and additional resources.

  • "Juvenile HD Handbook: A Guide for Families and Caregivers (2nd Edition)" – JHD guide provided by HDSA that includes information on the diagnosis of JHD, medical care for JHD, financial/legal/social services, caregiver resources, and more.

  • “Juvenile Huntington’s Disease (Text and Audio)” – JHD guide provided by HOPES that explains the inheritance of JHD, the similarities and differences of JHD and adult-onset HD, recommended treatments for JHD, and more.

• Videos/Documentaries

  • “Here's the Deal with Parenting A Child With Juvenile Huntington's Disease” – In this episode of "Here's the Deal" created by HDSA, Jennifer Simpson, LCSW, sits down with Londen Tabor to discuss parenting a child with JHD.

  • “Her Mother’s Daughter” – Film produced by HDSA that explores a family's experiences with HD and 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 Guides

  • HDYO Resources – 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.

    Click HERE to Download HDYO's "Speaking to Children About HD" Brochure

  • HDSA Resources – 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.

  • HOPES Resources – 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

  • “Talking with Children about HD - Dr. Bonnie Hennig-Trestman” – Presentation by Dr. Bonnie Hennig-Trestman in which she answers questions about discussing HD in the family and community. This session is from HDYO's 2021 International Young Adult Congress.

  • “Here's the Deal with Talking to Kids About Huntington's Disease” – In this episode of "Here's the Deal" created by HDSA, Jennifer Simpson, LCSW, sits down with Dr. Kelsey Finn to discuss talking with kids about HD.

  • “Caregiver's Corner: Talking With Kids about HD” – Presentation by Dr. Janet Williams in which she discusses how to talk with children and youth about HD. This webinar is from HDSA's "Caregiver's Corner" series.

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