Wednesday, 20 October 2010

Hughes Syndrome

So after thinking long and hard, I decided that after telling people that I was raising money for FOUR charities, I really should choose another charity to support, but of course one that actually has a Just Giving page to make it as easy as possible for people all over the world to donate. 
After SARAID failed to set up their Just Giving account, I was therefore only supporting three charities, and seeing as everywhere says I'm supporting four, I decided to choose a charity very close to members of my family's heart. As you will know if you have read the second post on my blog, my aunty Nakita died in August this year. She was just 36 years old. I am already supporting Lupus UK in memory of her, but I have made the decision to also support Hughes Syndrome as she suffered from both Lupus and Hughes syndrome, which combined, caused her early death. Hughes syndrome is also known as 'sticky blood', and can be fatal if not caught and controlled early. I have chosen to support this charity as I believe people need to be more aware of what Hughes syndrome is and what it does, as it is not a very well known disease. We need to raise awareness, as Nakita's sister Petrina said, 'to stop any other family go through what we've been through'. 

'Hughes syndrome is an autoimmune disorder which can present many clinical features, some of which can be life threatening, including strokes and thrombosis, and it can also be the cause of recurrent miscarriage. The good news is that, once diagnosed, Hughes Syndrome is potentially treatable; the bad news is that, as the condition is relatively new, it often goes undetected or misdiagnosed. With your help we hope to raise the profile of Hughes Syndrome so that we can discover more about its causes, prevalence and treatment.'

So to not only raise awareness of this relatively new and rare disease, but to prevent any other family losing a loved one, please dig deep and sponsor me generously by donating to the Hughes Syndrome Foundation!

You can find out more about the charity from their website;

Listen to Nakita's sister Petrina's radio chat;

And of course donate;

My target is to raise AT LEAST £1000 for each charity! That is £4000 in please please invite your friends, colleagues, family members etc...send them the link, tell them what I am doing, and of course donate yourselves! It doesn't matter what the amount is, it can be anything from £2.50 upwards....every little helps!! I would rather lots of people donate a small amount, than just a few people donating a larger amount. I am grateful for every penny that is given! So far I have raised just over £90, so we still have a long way to go. Please help these very deserving charities by donating any amount you can :)
And if you are a UK tax payer you can Gift Aid it for free!

No comments:

Post a Comment