As I mentioned the other day I did some fundraising and campaigning at my college this week to raise awareness of Dystonia. On the Dystonia Society’s website they have a list of fundraising ideas one of them being Dress for Dystonia. This title inspired me. I encouraged both students and staff members of the college to get involved with my awareness raising campaign by putting on a Dystonia Society top. This ticked off two awareness ideas at once as the tops are green and it was twist on the Dress for Dystonia idea. Everyone who put on a top posed for a photo which I put into an awareness photo collage. Lots more people were willing to get involved than I expected which was great! The college have even done a news article on it and put it up on their website which is amazing as this too provides more awareness of Dystonia. 
Tag: go green
Raising Awareness
Raising awareness of Dystonia is vital. The Dystonia Society’s website says that an estimated 70,000 people in the United Kingdom have the condition. Considering just how many people this is, it is still such an unknown condition to both the public and the medical society. By raising awareness and funds more research can be done. Dystonia may not be life ending but it is life limiting. Without research there is no improvement in treatments for the condition and there is no cure.
When I became ill with the condition I had never heard of it, I had lived my life blissfully ignorant. Now it’s fast approaching the two-year mark of my being ill. Dystonia may have taken away many things from me but it has also inspired me. The only way change will happen is if we bring it around. We can sit and moan about Doctors not understanding the condition all we like, but what difference will that make? By actually having the condition and experiencing it we can choose to empower ourselves with knowledge and spread awareness.
I spent yesterday sat in my College canteen raising money and awareness for Dystonia. The age range of students at the college is from 16 to mature, yet all no matter how old or young were prepared to listen to what I had to say and asked lots of questions. I went with lots of leaflets that The Dystonia Society had provided me with and every single one of them got taken by people wanting to go away and read more.
Awareness is key to a cure being found and weeks like this one are the perfect time to do it. Tea parties, joining in with campaigns like the Go Green for Dystonia one or getting involved with Thunderclap, are all so easy but so effective!! Dystonia Awareness Week is not over until the 11th May, so if you’ve not joined in yet, why not now, every voice counts! https://www.thunderclap.it/projects/9777-dystonia-awareness-week
Fundraising and Awareness
As many of you the Dystonia Society is a charity that is very close to my heart. Without the amazing work they do I would not have known who to turn to in the beginning, I would most likely still be looking for a diagnosis. The support they provide is invaluable to so many sufferers and the website is full of information that is constantly being updated. They also help provide funding for research, this is vital as you never know whose research will one day find a cure to Dystonia. For such a small charity they provide an amazing service, however they are reliant on donations. This is why each year I do lots of fundraising activities and awareness campaigning.
My cousin David and his fabulous friend Sam are running the London Marathon in a couple of weeks’ time. This is something I admire them greatly for doing. They are aiming to raise a total of £3000 for the Dystonia Society. Now some of you may be thinking that’s a mighty high target! Well, that’s because the London Marathon organisers charge charities £2000 a place! So for charities to actually gain any money from donations the targets have to be placed extremely high. However people who have not gained a place through a charity don’t have to pay anywhere near this amount of money to run! If you would like to help David and Sam achieve there £3000 target here is their Just Giving link http://www.justgiving.com/DavidandSam2014.
A fab company called Recykilt are running a competition so if you like to win a one of kind Recykilt cushion, when you donate simply type the words Recykilt in the comment box, make sure you have included your name. You can see examples of previous cushions here https://www.facebook.com/recykilt/media_set?set=a.171278609595603.40296.100001403947434&type=3
David has been doing other bits of fundraising as well, with his previous company even joining in. So to help out we are throwing our annual Dystonia tea party earlier than normal to raise money to add to David and Sam’s total. As usual our tea party will consist of all the cake and tea/coffee you can eat and drink, along with lots of information on Dystonia. The Dystonia Society have been very kind and provided us with some fantastic leaflets so if anyone has any questions that I don’t know the answers to then I am sure they will be in there.
Last year myself and a lady in America organised an event called Go Blue. Well this year, I am encouraging everyone to Go Green during awareness week (May 3rd -11th), which is the Dystonia Society’s colour. Whether you dye a lock of hair green, dress in green, wear green make up etc., it does not matter as long as people know what you’re doing and why. Encourage as many people as you can to get involved, take a photo and spread the word.
The Dystonia Society are also using a website called Thunderclap that co-ordinates sending messages out for groups of people. The aim of this is that on the 9th May a mass message gets sent out at 1:30pm through the social media network saying ““Help us raise awareness of #dystonia, a neurological condition that causes muscle spasms. Do it for dystonia! http://thndr.it/1fXu9dr” The more people that sign up to Thunderclap, then more people will see this, it is a fantastic awareness tool, but it will only work if lots of us sign up to it. You can register through your Twitter and/or Facebook account with them, and it sends out a message on your behalf at the set time during awareness week. You can register here https://www.thunderclap.it/projects/9777-dystonia-awareness-week?locale=en .
I have some other fundraising and awareness ideas up my sleeve, but until they are certain I shall keep them for another blog post. Raising funds, and awareness is the only way Dystonia will ever be cured, so please share this, donate, and sign up!
Dystonia and Me 