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Experiencing the gradual transformation and loss of a loving parent to Huntington’s disease (HD), coping with the caring responsibilities that result, and coming to terms with the 50% inheritance risk, is highly challenging for the 700 children and young people in Scotland who are part of HD families. Our Youth Project provides long-term counselling, group activities and parental support that is tackling the high rates of substance abuse, homelessness and suicide that result from the stress of growing up with HD. We offer a life-line to the most vulnerable young people in the HD community, helping them to realise that they do have a future and life is worth living.

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Categories

  • Community Support & Development Community Support & Development
  • Education/Training/Employment Education/​Training/​Employment
  • Health/Wellbeing Health/​Wellbeing
  • Homeless/Refuge Homeless/​Refuge
  • Hospitals/Hospices Hospitals/​Hospices
  • Human Rights/Advocacy Human Rights/​Advocacy
  • Beneficiaries

    • Children (3-18) Children (3-18)
    • Young People (18-30) Young People (18-30)

    Situation

    Children from HD families often have to cope with isolation and stigma, family secrets and a lack of information, poor parenting and multiple bereavement. Having HD in your family can restrict access to mortgages, life insurance and careers. It also impacts hugely on prospects for adult relationships and decisions about starting your own family. These factors cause a sense of hopelessness that can lead young people into a life on the margins of society. Our Youth Project comprehensively addresses the needs of children and young people under the age of 25, empowering them to see a brighter future, and so dramatically improving their chances of achieving a decent quality of life. Our two highly qualified Youth Workers, Karen and Catherine, are based in Aberdeen and Glasgow. Together they intensively support up to 100 children and young people all over Scotland each year through: Counselling and Advice - regular 1:1 meetings and phone calls allow young people to discuss any aspect of living with HD including decisions about the genetic test. Parents are also supported to explain HD to their children and maintain positive family relationships. Social activities - two summer camps at adventure centres and regular activities throughout the year allow young people from HD families to meet each other and share their experiences, whilst building self-esteem and confidence and having great fun. Peer group development - an Advisory Group of three young people now plays a part in planning and development of the project. A dedicated Young People’s Conference is planned for 2009/10 as a forum for communicating the views of young people living with HD. International links are being established with other HD youth groups around the world. Resource Development - a DVD produced by project participants, a quarterly newsletter, a dedicated Youth Website and project literature all help to inform children and young people in an age appropriate way about HD and its impact. Professional liaison - Karen and Catherine work closely with other agencies to ensure that young people receive the consideration and support that they need. The SHA Youth Project has been staffed solely by Karen since its beginning in 2002 with funding from Children in Need. This funding ends in October 2007. A 4-year lottery grant for Catherine’s post was received in February 2007, conditional upon the continuation of Karen’s post following the end of the Children in Need funding. The hereditary nature of HD, and the poverty and isolation that it causes in generation after generation, mean that SHA has no connections to fame or fortune. Community fundraising by our beneficiaries is severely limited by their need for secrecy due to the negative impact of association with this hereditary disease. HD has a huge impact on the lives of over 5000 people in Scotland. Sponsorship of this project will have a huge impact on the quality of life of some of the most disadvantaged families in the country.

    Solution

    100%
    Categories

  • Community Support & Development Community Support & Development
  • Education/Training/Employment Education/​Training/​Employment
  • Health/Wellbeing Health/​Wellbeing
  • Homeless/Refuge Homeless/​Refuge
  • Hospitals/Hospices Hospitals/​Hospices
  • Human Rights/Advocacy Human Rights/​Advocacy
  • Beneficiaries

    • Children (3-18) Children (3-18)
    • Young People (18-30) Young People (18-30)