National awareness: Thanks to everyone... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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National awareness

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Thanks to everyone who liked and shared our charity's Facebook post today following the Daily Express article - over 15000 views! Yes - 15000!

All of us teaming together is clearly making a difference - the more we shout, the more we will be heard.

I'd just like to say thanks to everyone who takes part, lurks or listens here. Especially to Mary who holds this forum together with the help of her trusty administrators xxx

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And by the way, ALL the moderators do this job voluntarily - not many people are that altruistic so we are blessed. Thank you moderators for your time, experience, knowledge and kindness x

MaryF profile image
MaryFAdministrator in reply to

Thanks, I am lucky to have great people helping and some do just as much as myself and I rely on them totally. MaryF

Manofmendip profile image
Manofmendip in reply to MaryF

Kate & Mary. I agree and I am pleased and proud to be able to be an Admin on here and help patients. We are told by our members, time and time again what a difference being able to come on this forum and ask questions makes to their lives. Dave

in reply to Manofmendip

We are very lucky to be in such a safe pair of hands as yours Dave - you always give such sensible and good advice x

Manofmendip profile image
Manofmendip in reply to

Thanks Kate x

bernieembleton profile image
bernieembleton in reply to

I could not agree more. Well done everyone who keeps this site going.

MaryF profile image
MaryFAdministrator in reply to bernieembleton

Yes we do our best on here, and like doing it, the information sharing is invaluable and of course all the internet traffic it drives helps more people find out about the disease. MaryF

Suzypawz profile image
Suzypawz

Sharing posts & articles are the least we can do to help raise awareness, Mary definitely keeps us all in line! Good gall! :-D 15000!!!! Wow!! X

MaryF profile image
MaryFAdministrator in reply to Suzypawz

Ha ha.... I could try...xx M

I missed the article myself.

I dont do facebook and didnt see the newspaper entry. There may be others in the same position so here is the link

express.co.uk/life-style/he...

daisyd profile image
daisyd

That's really good news, please can you tell me how to put it on my face book page ?

MaryF profile image
MaryFAdministrator in reply to daisyd

Hi you can either copy and paste, or you can go to the HSF charity page and share it from there onto your time line. MaryF

daisyd profile image
daisyd

Thank you all done, easy I didn't know I could copy and paste from my I pad, so learnt that as well

in reply to daisyd

LOL - thanks for spreading the word again x

Lure2 profile image
Lure2

I agree with the others and especially Dave when he is saying that we mean something to others to help when we tell our own stories how we have tried to feel better

That is why I am on this site because it is so important that the whole world will know of this illness. APS is not so rare but so very under-diagnosed (undiagnosed).

I have been on this site for many years and I think it is an exstremely good site. I have learnt so much and also from the excellent books written mostly by professor Graham Hughes but also by Kay Thackray and others.

Thank you for beeing here: Kerstin in Stockholm

in reply to Lure2

You are a wonderful asset to this site Kerstin - again, we are lucky to have you on board x

Lure2 profile image
Lure2 in reply to

Thank you Kate. I am happy to be here. Kerstin

Wow - the 'reach' on Facebook is now up to 16500 - best ever :)

MaryF profile image
MaryFAdministrator in reply to

That is great! MaryF

jetjetjet profile image
jetjetjet

:-) :-) :-) :-) :-) :-) and Casey

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