Our researcher Dr Karen Forrest Keenan has recently been reappointed as a Board Member of an exciting and innovative online charity for young people impacted by the hereditary condition Huntington's disease.
The Huntington’s Disease Youth Organisation – or HDYO as it is widely known – is a UK based non-profit organisation with the objective of improving access to support and education to young people impacted by Huntington’s disease (HD) globally (see www.hdyo.org/ for more information). Since its launch in 2012 it has become the leading resource and support service for children and young people impacted by this devastating inherited condition. With over 6 million website views and over 8000 followers it has reached a global audience and is making a difference to the lives of young people at risk of HD all over the world.
Prior to this appointment Dr Forrest Keenan was involved with the charity as an ‘expert reviewer’ developing content for the site; HDYO has galvanised a panel of international experts, together with young people and family members, to develop age appropriate, accessible and trustworthy information about the condition; see http://en.hdyo.org/eve/about/105. With a keen interest in the psychosocial impact of adult-onset inherited conditions on young people and their families, Dr Forrest Keenan was invited to be a member of the board because the main body of her published work focusses upon Huntington’s disease, bringing particular attention to the challenges facing young people at risk and those who seek predictive genetic testing; see http://www.abdn.ac.uk/hsru/people/k.keenan/#publications. Yet Dr Forrest Keenan is no ‘ivory tower academic’ as she also brings extensive knowledge of running a Youth Service for young people at risk of Huntington’s disease, having developed the Scottish Huntington’s Association’s pilot Youth Project into a National Youth Service from 2004-2010. As such Karen is a valuable member of the HDYO board and has been reappointed to serve the charity for another two years.
“Karen brings very useful skills to the HDYO board with her experience in HD youth services and now in research on young people's experiences of being impacted by HD. Her research helps HDYO understand the needs of young people and her experience makes her an excellent board member. We are delighted Karen will be staying on for another 2 years.” (Matt Ellison, Project Coordinator and Founder of HDYO)
As Karen has recently completed a Post-doctorate Fellowship exploring the ‘Sharing of information with children and young people about genetic risk’ the findings of this project will be used to provide better information and support for children and young people impacted by HD, as well as those young people who seek information and genetic testing for other serious adult-onset inherited conditions. Ultimately, better information and support means individuals can make more effective decisions about using genetic testing (or not), having children, disease management and coping with one’s risk.
For more information contact Karen at: k.keenan@abdn.ac.uk