Scottish Huntington's Association

Scottish Huntington's Association
Founded 1989
Focus Care and support for families affected by huntington's disease
Location
Area served
Scotland
Key people

John Eden (chief executive);[1]

Sarah Winckless (patron)[2]
Slogan Empowering ordinary people to meet extraordinary challenges!
Website www.hdscotland.org

Scottish Huntington's Association, also known as SHA, is a registered charity located in Scotland that supports families affected by the degenerative brain condition Huntington’s disease. Its headquarters is in Paisley.[3]

History and operation

The charity was established some 25 years ago by families living with Huntington's disease and its chief executive is John Eden.[1]

It works with the NHS and other agencies to co-ordinate a national plan for delivery of services to Huntington's patients and their families.[4] It is also a member of the Neurological Alliance of Scotland.[5]

The charity funds nine specialist services across Scotland's regions to assist with access to nursing, welfare and other support.[6] It has been estimated that 16 in every 100,000 people in Scotland are living with the illness and the charity has reported an increase in referrals in recent years.[4][7] The charity also delivers youth services to young people who may be affected by the condition and works to raise awareness of the condition.[8]

In 2015, SHA and Stirling University received a prize at the Scottish Charity Awards for a joint project to design an accredited course to improve the awareness and knowledge of huntington's disease among health and social care staff in Scotland. Said to be the first of its type, the course is part of the Scottish Qualifications Framework.[1]

The SHA is part of the UK HD Alliance.[9] It is also a member of the International Huntington Alliance.[10] Its patron is Olympic rower Sarah Winckless, who was diagnosed with Huntington's Disease several years ago.[11]

See also

References

  1. 1 2 3 Cardwell, Paul (4 June 2015). "Charity's university partnership is top of the class at Scottish Charity Awards". Third Force News. Retrieved 13 June 2015.
  2. ↑ Adams, Lisa (6 September 2010). "Former Olympic rower Sarah Winckless on why she is battling to raise money for the sufferers of Huntington's disease". Daily Record and Sunday Mail. Retrieved 13 June 2015.
  3. ↑ "Scottish Huntington's Association". frsb.org.uk. FundRaising Standards Board. Retrieved 13 June 2015.
  4. 1 2 "Warning after '55% increase in Huntington's disease sufferers'". BBC. 19 May 2015. Retrieved 13 June 2015.
  5. ↑ "Our members". scottishneurological.org.uk. Scottish Neurological Alliance. Retrieved 13 June 2015.
  6. ↑ "Huntington's disease: local area groups". nhsinform.co.uk. NHS Inform. Retrieved 13 June 2015.
  7. ↑ Williams, Martin (1 April 2013). "Victims of Huntington's disease need more help, warns charity". Scottish Herald. Retrieved 13 June 2015.
  8. ↑ Madeley, Gavin (25 May 2015). "The picture of health, but these siblings are facing an agonising gene test dilemma to discover if they have devastating Huntington's disease". Daily Mail. Retrieved 13 June 2015.
  9. ↑ Lomas, Clare (2009-06-11). "Tony Hadley and Shane Richie named Huntington's Disease Association's new patrons". Nursing Times. Retrieved 10 December 2011.
  10. ↑ "List of member organisations". IHA. Retrieved 10 December 2011.
  11. ↑ English, Tom (15 July 2014). "Katherine Grainger: 'It's not fair, it's not how life should be'". BBC. Retrieved 13 June 2015.


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