IMPORTANT ANNOUNCEMENT - PLEASE READ!

IMPORTANT ANNOUNCEMENT - PLEASE READ!

Dear Members

Important Announcement

As you are aware, the Hughes Syndrome Foundation Charity (HSF) Forum has been administrated by three Administrators MaryF (Mary), APSnotFab (Lynn) and Manofmendip (Dave) for a number of years very successfully. The Charity has been extremely happy with their work and has let them run the online Forum.

As the HSF Charity also has links to other social media and online channels, it has been decided that the three Administrators will take over the total control and running of this online Forum from Wednesday 29th June 2016.

The HSF charity’s main aims are to provide support for patients and their families, to raise awareness of APS/Hughes syndrome, as well as educating the medical profession and funding research. It welcomes the essential work of the HealthUnlocked Forum and other social media groups and online support channels, since it gives the charity an invaluable platform and outlet to keep patients informed of its activities and initiatives.

Mary, Lynn and Dave are extremely excited to announce that the new Forum will be called Sticky Blood-Hughes Syndrome Support.

We want to assure you that nothing on the online Forum will change other than the name (and a new look), as it will still come under the umbrella of HealthUnlocked and will have their full IT support.

The name change is fully supported by all concerned and both the Forum and the HSF Charity will continue to work together in the future as always, in order to raise the very important issues and awareness about this condition Hughes Syndrome/ Antiphospholipid Syndrome, that we all have. This will include a link to the HSF website and Facebook page from the Forum and the HSF website will carry a link to this Forum.

We look forward to your continued support and to seeing you on the Forum as usual.

Best wishes

Kate, Mary, Lynn and Dave

25 Replies

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  • We will still be members right? Or do we have to sign up again?

  • No, everything is the same as before, on here this forum and of course if you are a paid up member of HSF that stays the same. MaryF

  • Thanks mary

  • Thats right, no one has to do anything at all except of course keep using the Forum as usual!! :-)

  • Thanks

  • Thx Mary, Lynn, and Dave! Also I'm not sure if I know Kate, but Thank You anyway! The work y'all dedicate yourselves and time to is truly amazing and selfless! Godspeed!!!

  • Totally agree. Great job done by all.

  • Kate runs the charity HSF as charity manager and we will still be linked as we all want the same thing, but the forum is getting bigger and bigger and very international now, rather than just UK. MaryF

  • Hi all.

    My colleagues Mary & Lynn have done the hard work involved in this new move, as I have been very busy with my business and clients.

    Nothing will change in respect of your membership of the forum or the support that your forum admins provide to you all as members. Just the name and look will change.

    Best wishes.

    Dave

  • I think it is great that you are all doing the forum as you give us such great support and advice. And I like the new name too. Just one thing I wondered - if anyone joins HU and looks up Hughes Syndrome under forums will they still be able to find you?

  • absolutely they will. MaryF

  • Great. Thanks Mary.

  • Great work, congrats.

  • Great work, and very usefull , congratulations to you all,

  • Congratulations. Thanks to all three of you for the work that you do. Please understand that it is important to all of us!

  • This new group is also on Twitter now as well - well hoping it is you 3 and Ive not just followed a crank account!

    Look forward to continuing on with you all x

  • Thats right - just setting up there too. Was trying it out today so you obviously were on the ball to have caught it!!

  • About to set mine up! MaryF

  • Well done guys, you're doing a great job. It makes such a difference to know a group like this is here.

  • Thanks to you three and to all the past people to have served us so well as well as administrators To you all my undying Thanks.

    I have been here going on 6 years . I have seen the GOOD the BAD and the UGLY. But thru it all we have always had our devoted and committed administrators.

    They have a knowledge that is unrivaled by none, I have many a time taken info from them straight to my specialist and it was received unquestioned and with an open mind .

    I don't know what i would have done without them as when i was first in the group i knew nobody over here in the states and then within a year they started filtering in.

    But as i said my sanity was held in place from the very start trying to learn and understand this horrible disease .

    So thanks to one and all

    Casey and I

  • Aw! shucks thanks, we do our very best 😇

  • doesn't it just stink to be so dam good that people faint at the mention of your names !!! :-) :-) :-)

  • Ha ha! MaryF

  • My Over The POND Pals

  • You have been a fantastic team and life savers on more than one occasion

    Good luck 🍀

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