ROHHAD Association

EDM number 1382 in 2017-19, proposed by Martin Docherty on 12/06/2018.
Categorised under the topics of Charities, Children and families and Diseases.

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.

This motion has been signed by a total of 19 MPs.