Early day motion 1382

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ROHHAD ASSOCIATION

That this House notes and praises the dedicated fundraising campaign by the ROHHAD Association that recently held its Annual Charity Ball with the proceeds being used to fund medical research towards finding a cure for all of the children battling Rapid Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Nervous System Dysregulation Syndrome, which statistically affects one in 73 million; understands that thanks to the fundraising by the Association over the last three years, which has seen them raise over a quarter of a million pounds research into finding a cure, will hopefully begin in the UK and Italy by the end of the year; wishes to record its heartfelt thanks to the hard working trustees and supporters of the ROHHAD Association, which was founded by Elizabeth and Ian Hunter of Alexandria, West Dunbartonshire, after their son Aaron was diagnosed with the syndrome at the age of five years old; further notes that the campaign has received the full support of Avengers actor Robert Downey Jr after Aaron selflessly used his terminal wish to ask the real Iron Man to help him raise awareness and funds for ROHHAD research, with Mr Downey Jr responding very generously and helping the Association reach a global audience; notes that Aaron's selfless wish was motivated by his desire to help his special friends with ROHHAD syndrome from all around the world; and believes that Aaron is an inspiration to everyone and should be commended for his bravery in facing ROHHAD with such a positive outlook.

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Total number of signatures: 19

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Showing 19 out of 19

Name Party Constituency Date Signed
Blackford, Ian Scottish National Party Ross Skye and Lochaber 12.06.2018
Blackman, Kirsty Scottish National Party Aberdeen North 12.06.2018
Brock, Deidre Scottish National Party Edinburgh North and Leith 12.06.2018
Brown, Alan Scottish National Party Kilmarnock and Loudoun 12.06.2018
Cowan, Ronnie Scottish National Party Inverclyde 12.06.2018
Day, Martyn Scottish National Party Linlithgow and East Falkirk 12.06.2018
Docherty, Martin Scottish National Party West Dunbartonshire 12.06.2018
Gethins, Stephen Scottish National Party North East Fife 12.06.2018
Grady, Patrick Scottish National Party Glasgow North 12.06.2018
Grant, Peter Scottish National Party Glenrothes 12.06.2018
Hendry, Drew Scottish National Party Inverness Nairn Badenoch and Strathspey 12.06.2018
Hosie, Stewart Scottish National Party Dundee East 12.06.2018
MacNeil, Angus Scottish National Party Na h-Eileanan an Iar 12.06.2018
McDonald, Stuart Scottish National Party Cumbernauld Kilsyth and Kirkintilloch East 12.06.2018
Monaghan, Carol Scottish National Party Glasgow North West 12.06.2018
Newlands, Gavin Scottish National Party Paisley and Renfrewshire North 12.06.2018
Shannon, Jim Democratic Unionist Party Strangford 13.06.2018
Stephens, Christopher Scottish National Party Glasgow South West 13.06.2018
Thewliss, Alison Scottish National Party Glasgow Central 12.06.2018