Twitter Fame! Celebrity support at l... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,414 members10,623 posts

Twitter Fame! Celebrity support at last :)

14 Replies

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

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

Storky profile image
Storky

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

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!

paddyandlin profile image
paddyandlin

Yeah we are getting socially connected

Storky profile image
Storky

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!

travelnut profile image
travelnut

Fantastic! Let's keep it spreading.

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

paddyandlin profile image
paddyandlin

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

in reply topaddyandlin

thanks :)

Lesley_D profile image
Lesley_D

I'M there :)

Lesley_D profile image
Lesley_D

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

Happy weekend

Suzypawz profile image
Suzypawz in reply toLesley_D

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

Izzchick profile image
Izzchick

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

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

Suzypawz profile image
Suzypawz

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

Not what you're looking for?

You may also like...

Twitter? How to

Trying to follow Prof Hunt amongst others on twitter. I am signed up but not sure how to follow and...
Wittycjt profile image

At last

I'm so happy we have finally managed to get my twin referred to St Thomas' after she was told it...
huds profile image

One Step At A Time!

The more posts I read the more I realise this is such an awful illness. It hides, it jumps up from...
WendyWoo50 profile image

London support group meeting Wednesday 30th October 2013

Ann Sumra runs the London support group and has restarted it after a short break. This time it...

Realising your Potential - taking control of your illness?

Hi Last night I went to a class called "Realising your Potential" It was run by School of...

Moderation team

See all
KellyInTexas profile image
KellyInTexasAdministrator
MaryF profile image
MaryFAdministrator
HollyHeski profile image
HollyHeskiAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.