Huntington Alliance lobbies Holyrood

A coach load of people from Glasgow recently attend a reception at the Scottish Parliament to raise awareness of Huntington’s Disease – an inherited disorder that causes the degeneration of brain cells. The visit was in advance of Huntington’s Awareness week – Monday 7 June to Friday 11 June.
Around120 people from across Scotland met MSPs from all parties. Speakers included: Hugh Henry, Labour MSP for Paisley South; John Eden, Chief Executive of Scottish Huntington’s Association; and Cath Stanley, Head of Care Services England & Wales.
June Brown, a carer, told how she copes and described the excellent support and practical help she receives from the Scottish Huntington’s Association (SHA).
Sarah Winckless, the Olympic gold medallist and Patron of the Association, spoke very passionately about how her mother was diagnosed with Huntington’s and how her family coped.
She also told how the help she received from SHA was invaluable and described the work they do as ‘amazing’.
Errol Walsh, from Northern Ireland Huntington Association, performed his song ‘Rachel’, which he wrote for his stepdaughter who had Huntington’s. This was a really moving and sad song and brought a fitting conclusion to the proceedings.
The evening was also the launch of the amalgamation of three Huntington’s Associations now called the UK & Irish Huntington’s Alliance.
John from the SHA told the LOCAL NEWS: ‘I was delighted at the turn-out for the event. It was an indication of how important awareness-raising is to people living with Huntington’s disease.
‘I thought June Brown and Sarah Winckless spoke very powerfully of how Huntington’s Disease had affected their lives and it was obvious that the MSPs who had taken time to attend were very moved by what was said. It is important that we now follow up the momentum generated by the reception and continue to raise awareness about this relatively unknown but devastating condition.’
For more information: go to the Scottish Huntington’s Association website- www.hdscotland.org.