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The Huntington Society of Canada (HSC) is pioneering a new national program called Youth for HD, which reaches out to youth living with HD. Originating in Alberta this program will move to major centres in Western Canada with the intent of developing a model that can be utilized worldwide.
The focus of the program is to develop resilience, promote understanding reach children who are isolated and create networks to foster kinships. This specific type of programming will help children who are struggling and will help those who are doing well to do even better. Those who are doing well will be invited to take leadership roles in a variety of creative projects that will be designed to help strengthen the program and build leadership skills along the way.
Youth for HD: Reaching out to Children and Youth
Children and youth in the Huntington’s community face tough challenges: the stress of having a parent who is seriously ill, financial hardship when a family breadwinner can’t work, the fear of inheriting HD, and the worry of what to tell – or not tell – their friends.
That’s why the Huntington Society of Canada is pioneering a new national umbrella program called Youth for HD. Our goal is to foster resilience in children and youth so that they can adjust and adapt to living with HD as constructively as possible.
Already, we’ve laid a lot of the groundwork. Here’s a list of all the planning and preparation we’ve accomplished so far:
Reviewed the scientific literature
Dr. Nancy Roblin, R.N. Ed.D, an Assistant Professor in the Faculties of Education and Health Sciences at Queen’s University conducted a comprehensive review of the scientific literature looking at how HD affects children and youth. This study clearly demonstrates the need for special programming for youth in the HD community to optimize their healthy development into adulthood.
Orchestrated a worldwide exchange of information on youth programming At the recent World Congress on Huntington Disease in Vancouver, HSC led a worldwide exchange of information and ideas about the best ways to serve children and youth living with HD. Other key participants included Scotland, England, Ireland and Australia. Our findings will be used to help design Canadian programs.
Attracted 50 youth to YPAHD
Fifty youth (aged 18-25) from across Canada now belong to Young People Affected by Huntington Disease (YPAHD), an HSC support network. Plans are underway to establish a leadership/mentorship training program by spring 2010 to help YPAHD volunteers support their younger peers in the HD community.
Established a website by youth for youth
With help from National Office, a team from YPAHD that can be accessed through the HSC Website, It is a website specifically designed by youth to assist young people coping with HD. Now we’re exploring options for meeting the needs of the younger age groups through the web.
Held a pilot project planning meeting
In May, we held a workshop in Northern Alberta that brought together Huntington Society staff, YPAHD members, representatives from local HSC chapters in Edmonton and Camrose, and two local youth. Our goal was to begin planning a face-to-face program for high-school aged youth. Because the stigma of HD can be strong, many families have trouble knowing how and when to tell their children about HD — a challenge that must be overcome in order to serve as many youth as possible.
Survey of Parents and Adult Children
The planning team surveyed parents and adult children who were raised in families living with HD to fully understand their fears and concerns and the kind of programming that is needed.
Now, armed with all the knowledge we’ve gathered, we’re ready to continue our work reaching out to children and youth in the Huntington community across Canada. Stay tuned for updates in the months ahead!