Sticky Blood-Hughes Syndrome Support
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New website case studies

Hi All

I know a lot of our charity's members are already media volunteers - thank you to our 120 brave people :)

We will be launching a new website this autumn and will be featuring a case of the month including a picture of the person.

I just wanted to give you the opportunity to become a media volunteer if it appeals to you.

Please contact me on kate.hindle@hughes-syndrome.org if you would like me to send you the questionnaire.

I'm afraid this only applies to people in the UK - no offence to anyone overseas but journalists here only want case studies from the UK - sorry!

Thanks,

Kate

12 Replies
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Yes you can count me in. I think the more of us the better and on some days, some of us may feel to be-fuddled and have to say pass, and on other days feel up for it! Great news. Mary F x

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Hi Kate

Yes me too!! Will mail you

Hugs Sheena xxx :-)

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I think I filled this in Kate.

Am I still on the list? If not let me know and I will do it again.

Regards Sue

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Thank you to everyone who has email asking for the questionnaire. Mary and Sue - you've already been good and are in the database.

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Count me in Kate!!! Oh, and I may be in London for a day or two beginning of July....

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Thanks Kristina but I'm afraid it only applies to people in the UK :( UK journalists and media only want stories from the UK - maybe when APS is recognised throughout the world, we will have an international charity :)

Let me know when you're in London - I'm off for a much needed flop and drop in Corfu from 6th July though.

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hi Kate I am happy to be included

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Can you email me then please Sharon - kate.hindle@hughes-syndrome.org. Thanks :)

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Kate

You have my story, so I'm in. I cannot wait until the new website is launched.

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I know TJ - yours is one of the most shocking so I will definitely be asking you for a photo to go on our front page! I'm going to be emailing the media volunteers over the summer for photos of themselves - I know some people will freak and not want to do it but other will ... I hope :)

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hi kate i believe i did complete a questionnaire for this but can you check to see if you did receive it? many thanks kath

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Hi Kath

No, I never did receive the questionnaire although you did ask for one some time ago. Perhaps it's lurking somewhere on your desktop?

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