Huntington’s Disease and Youth Retreats
Studies have found that unhealthy lifestyles are a major factor in the development and worsening of many chronic diseases 1. However, immersive retreat experiences have been shown to have various health benefits, beginning from immediately after, to five-years post-retreat 2. Retreats, specifically youth retreats, are often a time and place for intentional bonding within a group. They are purposeful, meaning they strive to teach participants a certain skill set, build community, and/or are a place for growth through individual and group activities, reflections, and time away from each participant’s everyday life. HD youth retreats are unique in that they allow youth with HD to meet others living similar experiences, allow them to build a strong support network, and are planned to provide ample resources for all youth impacted by HD to make the experience accessible. Below are a few examples of HD- specific youth retreats that fulfill this goal.
The North American HD Youth Camp
The annual North American HD Youth Camp hosted by the Huntington’s Disease Youth Organization (HDYO) offers young individuals affected by HD a chance to meet other youth in the same shoes. Throughout the course of the camp, these individuals share experiences, grow more aware of HD through educational workshops, share experiences, and participate in various activities, such as swimming, rock climbing, hiking, and archery. Through these activities, the creators of the camp hope to diminish feelings of isolation among HD youth, and build strong peer connections with others in experiencing similar situations.
The camp is open to Young people ages 15-23 that live in the United States, Canada, and Puerto Rico who are impacted by HD, and is capped at a capacity of 45 participants. The entirety of the camp is hosted by Camp Cedar Glen (located in Julian, CA about an hour from San Diego, CA) in mid-August for 5 days, and is free to attend for all participants (camp, food, and travel costs are covered).
The camp is run by staff from HDYO (here is a full list of all staff), HD professionals (social workers and genetic counsellors) from around the country, and a trained and trusted group of young adult volunteers from the HD community in North America to form the support team. Additionally, all camp activities are supervised by certified staff that are employees of Camp Cedar Glen. On a daily basis, the days will start with breakfast as a group. After that, depending on the day, there will be a mix of recreational activities, educational sessions and some sharing sessions. There is no religious aspect to the HDYO camp, despite Camp Cedar Glen hosting its own summer camp with a religious component (unrelated to HDYO). Overall, the aim of the camp is for young people to feel more supported, develop an improved understanding of HD, and form strong connections. You can find an article detailing the experiences of past participants and staff here.
National Youth Alliance (NYA) Youth Retreats
The Huntington’s Disease Society of America’s National Youth Alliance (NYA) aims to motivate youth to get involved in their local HDSA Chapters, affiliates, and support groups through education, fundraising, advocacy and awareness events for Huntington’s disease. The NYA is a collection of children, teens and young adults from across the country whose mission is 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”. The NYE hosts Youth retreats in various cities across the United States to foster learning and community building among young people ages 12-29 whose lives are touched by Huntington’s disease. The retreat includes professionally led talks about issues relevant to young people affected by HD, camp activities, and a group art project to conclude the day. This past year, the retreats were located in Pittsburgh, Chicago, New Orleans, and Sacramento.
The event is free to attend for all participants; it includes a transportation reimbursement of up to $350 for attendees (although reimbursement rates vary depending on accessibility), and hotel rooms reserved for youth and their parents who have to travel to attend their retreat. If a participant is currently receiving any medical treatment, or taking medications, they are required to fill out a medication information sheet. Additionally, the attended or their parent/guardian is responsible for their individualized medical care while attending the event. More logistical information can be found within the registration portal that opens every year for the retrats.
Other Program Resources
The Huntington’s Disease Society of America also has a website page that allows you to find events happening in your area upon providing a zip code. These events range anywhere from family retreats to team walks to conferences!
- Golubic, M., “Lifestyle Choices: Root Causes of Chronic Diseases”. Cleveland Clinic. This page has a brief overview of the impact which lifestyle choices can have on chronic disease. [↩]
- Naido, D., et.al (2018) “The Health Impact of Residential Retreats: A Systematic Review” .Pubmed. A technical analysis of the impact of residential retreats on health and wellbeing. [↩]