At the Huntington Disease National Conference held in Kelowna, B.C, we talked with Chandler Swope. She is with the Huntington’s Disease Youth Organization (HDYO). In this clip she talks about the summer camp they host along with Huntington Disease Society of Canada and the Huntington Disease Society of America.

The camp is free for young people affected by Huntington disease.

Huntington disease is a hereditary neurodegenerative condition.  Symptoms usually begins when a person is in their thirties or forties. If a child has a parent with Huntington disease, that child will have a 50/50 chance of acquiring the condition.

Since Huntington disease is a rare, and usually isolating condition, a summer camp is the only place where young people affected by this devastating disease can freely talk about it.

As Swope notes in this interview, the 50 people who attend the camp each year start the camp as strangers. But they leave as family. The camp is the only place where they can talk  about Huntington disease without having to explain the condition.

Next summer, the camp will be in San Diego, California. For more information about the camp, visit

To learn more about Huntington Disease Society of Canada, please read our interview with its CEO, Bev Heim-Myers.