For the first time in UK history, people with FND and their families have their own charity to fight for them. On Monday, FND Action announced that they have finally managed to become a charity, with all that that entails. Someone to raise money for research. Somebody to help raise awareness both on and off line. Someone who is planning to create a series of merchandise which will be available to anyone wishing to raise FND awareness. Someone to fight our corner. Someone to attend conferences and educate – doesn’t matter who but they can do it. Someone in the UK that newly diagnosed, frustrated, confused, scared people can turn to for advice and a sympathetic ear.
This is amazing new, not only as it shows that there are people out there who care, but it also demonstrates that it can be done for others who are thinking of going down a similar line but with different outcomes. This is something we need to shout about, as it may help approximately 40% of patients in a neurology ward. Not to mention the 25% of patients attending a neurology clinic. With time, lets hope that the work of FND action will help to reduce or eradicate the blank looks that patients get when their consultant or doctor doesn’t know what to do. A charity that can raise money for FND research will raise the profile of the disorder, ensure that the right sort of research will be carried out, possibly support PhD students who are interested in the disorder etc. Perhaps I’m going to far ahead. However, now we have our first charity, the path ahead is a lot more rosy….