51853
2017-19
1382
ROHHAD Association
Martin Docherty
2018-06-12
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.
Charities
Children and families
Diseases
Martin Docherty
2018-06-12
Proposed
West Dunbartonshire
Scottish National Party
Peter Grant
2018-06-12
Seconded
Glenrothes
Scottish National Party
Carol Monaghan
2018-06-12
Seconded
Glasgow North West
Scottish National Party
Deidre Brock
2018-06-12
Seconded
Edinburgh North and Leith
Scottish National Party
Patrick Grady
2018-06-12
Seconded
Glasgow North
Scottish National Party
Ian Blackford
2018-06-12
Seconded
Ross, Skye and Lochaber
Scottish National Party
Alison Thewliss
2018-06-12
Signed
Glasgow Central
Scottish National Party
Angus MacNeil
2018-06-12
Signed
Na h-Eileanan an Iar
Scottish National Party
Drew Hendry
2018-06-12
Signed
Inverness, Nairn, Badenoch and Strathspey
Scottish National Party
Stephen Gethins
2018-06-12
Signed
North East Fife
Scottish National Party
Stuart McDonald
2018-06-12
Signed
Cumbernauld, Kilsyth and Kirkintilloch East
Scottish National Party
Martyn Day
2018-06-12
Signed
Linlithgow and East Falkirk
Scottish National Party
Gavin Newlands
2018-06-12
Signed
Paisley and Renfrewshire North
Scottish National Party
Alan Brown
2018-06-12
Signed
Kilmarnock and Loudoun
Scottish National Party
Stewart Hosie
2018-06-12
Signed
Dundee East
Scottish National Party
Ronnie Cowan
2018-06-12
Signed
Inverclyde
Scottish National Party
Kirsty Blackman
2018-06-12
Signed
Aberdeen North
Scottish National Party
Jim Shannon
2018-06-13
Signed
Strangford
DUP
Chris Stephens
2018-06-13
Signed
Glasgow South West
Scottish National Party