Dr. Bob and Dr. Bonnie at the Huntington’s Disease Youth Organization (HDYO) North America camp

For the last five years Dr. Robert Trestman, Chair of Psychiatry and Behavioral Medicine and his wife, Dr. Bonnie Hennig-Trestman, future director of the Carilion Clinic Huntington’s Disease Program, trade in their professional attire and become Dr. Bob and Dr. Bonnie at the Huntington’s Disease Youth Organization (HDYO) North America camp. Huntington’s Disease (HD) is a genetic, progressive, neurodegenerative illness. There is no cure for HD and eventually those who have the gene for HD will succumb to symptoms and die. Most people who have the gene will become symptomatic in their 30’s and 40’s.

HDYO offers young people ages 13-25 an all-inclusive free four-day retreat. These young people, some who have never left their towns, live across the US and Canada. For the last two years the camp has been held in Julian, CA. Some of the young people who attend have never met anyone their age who has a loved one with Huntington’s Disease (HD). Many of the campers are at-risk themselves meaning when they turn 18 they have an option to request genetic counseling and have a blood test which will show if they have the gene for HD or not.  

These young people are offered education, support, and a chance to be a kid and have fun. Over the four days the campers meet in large and small groups to discuss a range of topics related to HD. Some of these topics include: what is HD, how do I cope with having a loved one with HD, how can I decide if and when I want to test for HD, how do I help someone with HD, what clinical trials are currently offered? The camp is life changing for campers as well as the staff who all volunteer their time. At the end of the camp the young people return home armed with knowledge, confidence, and a huge support system which lasts long after the last camper gets on their flight home.