Motor Neurone Disease
Many big MND charities in the UK and the Government insist on calling MND a rare, and at times extremely rare disease. This is further cemented, with only a handful of celebrities affected that choose to speak out once diagnosed. There are many more celebrities, and hundreds of thousands of families, living with MND that silent sufferers. Quite often, big charities post about MND being rare on Rare Diseases Day, which attracts attention, however, whether they check it or not, these posts also attract hundreds of comments from people that have lost sometimes up to 7 people in their family, some less, some even more.
Labelling MND as a rare disease, when it clearly has hundreds of thousands of sufferers at any one time in the world, is unjust. Truly rare diseases or conditions are those that have some 28 cases recorded, since records were kept and this takes away from their plight. Also, it conveniently justifies no funding being given to MND for a cure. If the Government want to justify allocating budgets to New Year Eve’s fireworks, luncheons, wars, parties, and any other non life-limiting disease over MND, it’s about time they choose a different vocabulary, because our MND community is not satisfied with rare and sad excuses any longer. We deserve annual, regular funding and we deserve a cure.
The Mark Sommerville Foundation 