KIDS with Huntington disease (HD)

The Society proposes to launch this program over the next two years by contracting with experts in the fields ofchild psychology, health and development to assemble materials, explore arange of delivery options and design, produce and test a comprehensiveprogram to introduce children to HD. This program would originate in Albertaand move to major centres in Western Canada with the intent of developing amodel that can be utilized on a world-wide basis. The focus of the program is to develop resilience, promote understandingreach children who are isolated and create networks to foster friendships.This specific type of programming will help children who are struggling andwill help those who are doing well to do even better. Those who are doingwell will be invited to take leadership roles in a variety of creativeprojects that will be designed to help strengthen the program and buildleadership skills along the way. KIDS for HD Program This two-year national program will begin in Alberta, Canada, focusing onjunior high and high school-aged students (14-16 and 17-18 years of age).Children living with HD are clustered around the Calgary, Red Deer andEdmonton areas. They include children who have the HD gene and willinevitably show symptoms during their lifetime (about 600) and those withoutthe gene whose parents either have manifested HD or are at risk of gettingthe disease (another 1,200). Initially, the program will focus on young people who often feel isolatedand where HD may begin to have a greater impact on their healthy transitioninto adulthood and when they are beginning to make decisions about their ownlife and future. Based on the feedback received from the youth and thesuccess of this program, the pilot has the potential of being utilized topioneer different developmentally appropriate programming for youngerchildren. The intention is to harness the power of web-based strategies tosupport strategically timed face-to-face programming. This program will be designed to assist youth in understanding the nature ofthe disease and the importance of connecting to community, and to assistwith facilitating their participation in events with peers of similarexperience. The two most important components of building resilience in kids-- to help them cope with unusually stressful situations -- is to help thembuild a solid relationship with at least one person and to createopportunities where kids can feel challenged and experience success.

Youth for HD Activity Day Saturday February 28 2009 - Camp Chief Hector YMCA- Exshaw, Alberta 10am -5pm - Free Transportation can be arranged -

Register by Feb. 16.

For more infomation or to register please contact: Wayne Greenway 1-800-998-7398 or wgreenway@huntingtonsociety.ca