Neurofibromatosis Awareness Day
- Submitted by: Ash Regan, Edinburgh Eastern, Scottish National Party.
- Date lodged: Tuesday, 21 February 2017
- Motion reference: S5M-04137
- Current status: Taken in the Chamber on Wednesday, 17 May 2017
That the Parliament appreciates that 17 May 2017 is Neurofibromatosis Awareness Day; notes that neurofibromatosis (NF) is a genetic disorder that causes tumours to grow on the nerves and that tumours can develop anywhere in the nervous system, including the brain, spinal cord and nerves; further notes that there is no known cure for the condition, which people are born with due to a genetic mutation; recognises that, while 1 in 3,000 people are currently diagnosed with the condition, many go undiagnosed due to a lack of awareness; considers that, despite NF being one of the most common genetic disorders, people, including many parents, often find themselves telling GPs what their condition or that of their children is; notes that NF is a progressive condition and can cause a variety of problems, including physical and learning difficulties and mental health issues, and is also linked to autism; appreciates that people have concerns that, due to lack of awareness, those affected may not receive the correct treatment in time, and notes hopes that across all UK NHS boards, including NHS Lothian, NF patients will receive regular routine monitoring by specialists, in memory of the incredibly determined, Beth Beattie, who sadly passed away on 4 November 2016, aged four-years-old.
Supported by:
Clare Adamson, Tom Arthur, Jackie Baillie, Jeremy Balfour, Claudia Beamish, Colin Beattie, Miles Briggs, Donald Cameron, Jackson Carlaw, Peter Chapman, Alex Cole-Hamilton, Maurice Corry, Bob Doris, Neil Findlay, John Finnie, Kenneth Gibson, Jenny Gilruth, Maurice Golden, Christine Grahame, Iain Gray, Jamie Greene, Emma Harper, Clare Haughey, Alison Johnstone, Bill Kidd, Monica Lennon, Richard Leonard, Gordon Lindhurst, Richard Lochhead, Richard Lyle, Fulton MacGregor, Rona Mackay, Ben Macpherson, Ruth Maguire, John Mason, Joan McAlpine, Liam McArthur, Ivan McKee, Stuart McMillan, Pauline McNeill, Edward Mountain, Douglas Ross, Gail Ross, Alex Rowley, Anas Sarwar, John Scott, Elaine Smith, Liz Smith, Colin Smyth, David Torrance, Sandra White, Brian Whittle