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Huntington's Disease Youth Organization

The panel of experts

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Our panel of experts consists of professionals from various fields, to help cover a vast range of potential questions. We also have professionals who can talk to young people and answer questions appropriately. Send your questions to the experts to questions@hdyo.org.

Rhona MacLeod

Rhona MacLeod is a consultant genetic counsellor based at St Mary’s hospital in Manchester . She has been involved in genetic counselling and predictive testing for HD since 1992 and is Co-facilitator of the EHDN Working Group, ‘Genetic Counselling and Testing’. Rhona is strongly supportive of adolescents and young people having the opportunity to ask any questions they wish in relation to HD and feels that HDYO will be a terrific additional resource for young people.

Kirsten Walker

Kirsten Walker is the Team Leader / Specialist Youth Advisor for the Scottish Huntington’s Association Youth Project (SHAYP-Life), covering South/West Scotland. Kirsten has worked with the SHA for since 2008 and during this time has built upon the previous success of SHAYP Life and has driven it forward to become a more accessible, inclusive and cohesive service, which focuses on the needs of the children and young people living in families affected by Huntington’s Disease. Kirsten is currently completing her Doctorate in Counselling Psychology on a part-time basis, which will ensure that those young people, who require therapeutic support, can access a service from a person who empathises with, and understand their situation.
Kirsten has a dedication to working with young people, especially those who face difficult situations, and her focus is always on ensuring that their needs are met, to enable them to achieve their full potential in life.

Gwen Johnson

Gwen Johnson has worked at the Good Samaritan Society’s University Specialty Center for 31 years. Currently the nurse manager of the Huntington’s unit & East Men’s Behavioral unit, she has been the nurse manager of the HD unit since 1996. Helping residents and their families navigate through issues surrounding long term care placement, supporting and educating staff on HD specialty care. Currently is the vice president on the MN. HDSA board. Her ability to motivate and inspire as earned her the Minnesota Care Providers Leadership Award 2010 for outstanding service in her field.

Karen Keenan

Karen Keenan is a Health Services Researcher based in Aberdeen. She is currently involved in a research project looking at sharing information with children and young people about genetic risk funded by the Scottish Government’s Chief Scientist Office. The project has been developed by Karen and her supervisors based on the findings of her PhD work and experience of working with individuals and families affected by Huntington’s disease. Overall Karen hopes this project will contribute needed evidence about what professionals and families should tell children about genetic risk, and in the long term that this will help improve the lives of those who grow up at risk of serious inherited conditions.

Prior to this post Karen worked for the Scottish Huntington’s Association as their Youth Service Co-ordinator for five years. Karen helped to develop the project into a National service and is delighted that it now has three youth advisors working to support children and young people growing up with HD in Scotland.

As Karen has previous experience of providing support and information to children and young people growing up with HD she hopes she can use this to help some of the young people who contact HDYO.

Jane Paulsen

Jane Paulsen, Ph.D., is a Professor of Psychiatry, Neurology, Psychology and Neurosciences at the University of Iowa Roy J. and Lucille A. Carver College of Medicine. Dr. Paulsen has been studying Huntington disease for over 17 years and has had over 150 articles published in medical and scientific journals. She is the Principal Investigator for the international PREDICT-HD study, the largest HD clinical research study designed to detect early markers of HD. Study findings have contributed to the understanding of many aspects of the earliest stages of the disease. Paulsen is Principal Investigator for several other HD studies, including the JHD Natural History Study at the University of Iowa. She resides in Iowa City, IA, U.S., and is a frequent speaker at HD events both nationally and internationally.

Helen Santini

Helen Santini is the Care Adviser for Juvenile Huntington’s Disease (JHD) with the Huntington’s Disease Association (England and Wales), as well as one of the Regional Care Advisers working for the Association. She has also helped to co-ordinate the work of the JHD working group for the European Huntington’s Disease Network (EHDN). She is really pleased to be able to help HDYO as there is very little information for younger people affected by HD, both living in families affected by HD and also for those affected in some way by JHD.

Hugh Rickards

Dr Hugh Rickards is a Consultant in Neuropsychiatry who has being working with people with HD and their families for about 20 years.

Bill Beckett

Bill Beckett: I am a Genetic Counsellor based at St. Mary’s Hospital in Manchester, UK. I have been involved in HD clinics in the Manchester region since 2009. This includes working with individuals considering predictive testing, as well as clinics for people who have symptoms of HD. I am very pleased to be able to support HDYO and to help young people access the information they need.