Hi i'm Fred and i'm a medical marvel, welcome to my page!
Now all the important things are out of the way i'll give you a bit more information. I was born with a rare disease called spinocerebellar ataxia type 11, at the time of me writing this there are 53 recorded cases in the world. I am trying to raise awareness for it and also help other people who might be affected by similar conditions,
A few years before the condition had been properly diagnosed I fell into a self diagnosed episode of depression, I felt completely hopeless not knowing what was going to happen to me and my life felt pointless.
But then after a long time of feeling sorry for myself I decided I needed to make some changes in my life so I decided to change my outlook on life.
After a long and hard journey I finally started feeling better, and that's when I decided to dedicate my life to trying to raise awareness for this condition and also to try and help other people who might be in a similar situation to me.
At first I started a website (www.myshakylife.com) but after realising that this platform could only spread my message so far I had the idea of starting a facebook page (facebook.com/myshakylife) twitter (twitter.com/myshakylife) and youtube channel to try and spread my message further.
Now on to what you can do to help me, well in order for me to spread my message as far as possible I need to publicise this cause.
When I first started myshakylife in this form, I had the rather naïve (and stupid, mainly stupid) view that i'd be able to spread the word organically through word of mouth and don't get me wrong I've had some success doing this and it's been great, but that seems to have slowed down and the only way I know i can keep raising as much awareness as possible is to advertise.
Advertising is expensive, but it seems to be working well to raise awareness of spinocerebellar ataxia so in my opinion it is a vital tool in combatting this disease. I have used the little money I have available to me to put out adverts on social media but due to my financial limits I haven't been able to reach as far as I had hoped.
as well as advertising this great cause, I also need help to manage my condition. As I have mentioned in previous videos I have made, due to the fact there is no treatment available at this time for spinocerebellar ataxia,i have to do everything it is possible for me to do to alleviate my symptoms. Therefore I do a lot of physiotherapy which has so far been working better than I could have imagined, but again this is expensive. even the simplest aids I use such as balance pads are overly expensive, so I feel like help with this would be priceless to me too. At the moment I use the gym a minimum of3 times a week too as all the equipment I need is there but due to the cost of this i'm not sure how long i'll be able to continue with it.
My goal is to raise 150 pounds a month, 100 for advertising and 50 for any exercise or medical equipment I might need. That may seem like a lot and initially I thought so too, but I have thought long and hard about this and I have worked out that this sum would be ideal in helping me reach my goal.
If in any given month I am lucky enough to receive enough to reach this goal I would love to donate any remaining funds to a charity. My first thought would be ataxia uk but i'm open to suggestions.
Thanks for reading this and I will keep you all updated as my journey progresses, if you have any questions for me about anything then feel free to ask.