Round up of news from Hughes Syndrome Foundation

[MaryF]

Lots has been going on with marathons being run, and money raised by good people, who of course do it for all the right reasons! These below are all posts written by Kate on the Hughes Syndrome Foundation Facebook page, as an admin on here I think it is vital to support the charity and also information share. Certainly 43 of my friends took the trouble to like that page and I know other members have done the same.

1. As a small charity we are only allocated one London marathon place every five years, and this is of those years. Thanks and good luck to Emily McLaughlin who is running this Sunday on our behalf. Emily's partner, Martin, has Hughes/APS and was lucky to survive multiple PEs. We hope you enjoy your day and achieve the marathon

Emily McLaughlin is fundraising on JustGiving for Hughes Syndrome Foundation

justgiving.com

Help Emily raise money for this great cause.

2L

So via HSF; 2.. She did it! Congratulations to Emily McLaughlin for completing the London marathon in 5 hours and 16 seconds. A fantastic achievement plus over £2K raised for our charity. Thank you and well done

3. Bravo and congratulations to Michael Wren for running (and finishing) the Brighton Marathon on our behalf at the weekend. He finished in fantastic time - only 3 hours 46 minutes and 30 seconds and raised over £1000. Here is Michael with his medal plus his Hughes syndrome/APS fan club Hope you all had a great day and thanks for doing this for us.

Many members on here including myself have at times sponsored events, and it is nice on this forum to see the pictures when we can, as this forum has been so supportive since its formation by helping members and also of course bringing in funds. Hopefully Kate can upload some of the pictures on here soon for us, as of course not everybody uses Facebook.

Other news,I am busy moving house soon, but after that time, I am going to collate all the patient stories, regarding Seronegative Hughes Syndrome. I have had great offers of help, of course I will not make any money out of the book, I shall be going to London for another meeting soon, and funds raised will be donated to a charity to help patients with Hughes Syndrome.

MaryF

[donnabrain]

Good luck with the move

[MaryF Administrator in reply to donnabrain]

Thank you. MaryF x

[GinaD]

Thanks for the update! And I am so looking forward to that book you are writing(?) editing(?) collating(?) assembling(?)

Best of luck with the move and this project. I hope that yours may become the first hassle free move in history!( though I have a feeling it will not be so.).

Let me/us know when the move is accomplished and when the book is available. Will it be a hard copy only? Or an e-book format?). ( I like ebooks as they make me feel so spoiled. I hear an interview on NPR and think,I'd really like to read that. I reach for one of my devices, press a few buttons and voila! There it is.) ( of course, this behavior has resulted in devices full of books I have not finished reading yet. So far my acquisition of books exceeds my diligence in actually reading them.)( like I said -- I'm spoiled.)

[MaryF Administrator in reply to GinaD]

Hi, I got ill for a while and my children, plus house move etc. Also of course like everybody else busy with life and work and of course on here when I can. The questionnaire is being compiled ready to be sent out to interested parties.. and then I have the offer help of three other people to collate it together edit it and decide on format. Also some medical forwards in it which will be nice, it will raise money for charity and credit all the people involved, so although an idea from myself to start with it will become made by the very people interested in doing so. I have had two useful on line meetings about it and a couple in London. I promise to update people with progress as and when it gets going... which it is now. I also have some good press contacts and of course contacts in general. Format to be decided on. MaryF

[Hidden]

Good luck with moving house, Mary..hope an angel will be watching over you..Sorry to hear you got ill..I got ill through all the physical and mental stress of moving house last year, it's a killer ..look after yourself first and foremost. Be careful doing too much xx

[MaryF Administrator in reply to Hidden]

Thank you, we are not ready yet, the usual paperwork going on currently... luckily we are only going ten miles. MaryF x

[Lure2 in reply to MaryF]

I agree with Omega. Look after yourself first so we can have you as long as possible . What I mean is: Take it easy if you can! Kerstin

[MaryF Administrator in reply to Lure2]

Thank you! MaryF x youtube.com/watch?v=rjnzFrX...(Not working as expected?)

[Lure2 in reply to MaryF]

I laughed so I almost cried. Very funny movers. Thanks! Kerstin

[GinaD in reply to MaryF]

You haven't hired this company have you?

[MaryF Administrator in reply to GinaD]

Of course, it would not do for MaryF to be bored x

[Hidden]

Very funny.......x

[happee1]

mary, what is Seronegative Hughes Syndrome?..thanks

[MaryF Administrator in reply to happee1]

You have it with clinical symptoms, and it does not show up in the tests: 1. ard.bmj.com/content/62/12/1... 2. rheumatology.oxfordjournals...

MaryF

[happee1 in reply to MaryF]

oh ok thanks...mine showed up in tests

[bernieembleton]

I look forward to reading the book. I am sero negative and still continue to have to explain to medics of my condition. Best wishes on all of your good work Bernadette ( Bernie )