Sticky Blood-Hughes Syndrome Support

Twitter Fame! Celebrity support at last :)

We joined up with Twitter last week thanks to our volunteer Beth Willis who is now proficient in the ways of Tweeting.

We have already had some support in the form of a donation from Stephen Fry (he donated £200 to the niece of Nakita Gray who was fundraising for her aunty who died suddenly aged 36 a couple of years ago) but he has really done us proud now.

He must have picked up on our Twitter presence (please don't ask me how!) and tweeted his friends to show their support by retweeting:

The Hughes Syndrome Foundation is now on twitter! Pls can u RT to help spread awareness of this common but unknown condition

As a result we now have tweets from Jack Dee, Jenny Elair, Anthony Costa, Warwick Davies and Michael McIntyre to name a few.

If you fancy having a look at Twitter, please sign up then follow @HughesSyndrome.

14 Replies
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Way cool or as us New Englander's say WICKED cool!! I am going on my twitter now and adding you!!

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New at this but will have a go. Did a social media course this week so this will be a good practise.......cant guarantee where it will end up but Im told if you get the @ and # in there somewhere it goes to somebody!! lol

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Tell me about it - it's all beyond me but at least we're out there! Facebook is all I can handle. Thank god for Beth!

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Yeah we are getting socially connected

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Well I have just checked and I managed it! I am also a follower although nobody follows me so not sure that there is much point in tweeting!!!

Actually this was the point that was made on the course I was on, we are all becoming followers of celebrity, so my guess is only tweet something that contains a hashtag of somebody well known, that way they may retweet you!

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Fantastic! Let's keep it spreading.

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Fantastic the mesage and awareness is spreading / not on Twitter myself but is there a facebook page ?? :) well done guys xx

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Hi Revamp

see below link for Facebook page of HSF if that does not work type in Hughes Syndrome Foundation in search box and it will come up.

facebook.com/#!/pages/Hughe...

Paddy

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thanks :)

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I'M there :)

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Hi guys - I have retweeted, am at @Lesley dale

Happy weekend

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I typed yours in & no tweet results? I'm new to this twitter game...perhaps I'm doing something wrong?!!

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I'm also there, i'm @FutureMrsIzz!

I don't tweet as often as I used to as it's just too damn addictive...... ;-)

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Hi I've not long joined Twitter & only just seen this!! I'm @suzypawz

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