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.