Sticky Blood-Hughes Syndrome Support

raising awareness about hughes in the south west

Hoping to start up a south west based help group with others on this forum soon i have made the first step in organising a charity event at xmas where proceeds will go towards the charity. My daughter, Rachel is a singer and performer and to date have produced and written her own plays with fellow friends all in the entertainment business.

The plan is to put on a show for the xmas period for all ages (they had a massive sucess last year with a fund raising event which was very well supported).

currently rachel is putting on a play she has written and is producing on the 16th june at winterbourne community centre, after which she will be concentrating on the xmas production to help raise awareness and funds for the hughes charity. I will post more info closer to the time but the work has already begun for ideas of the show - watch this space -

kathy xx

9 Replies

Hi hun, sounds like a very talented daughter you have there :)

Good idea in starting the group in your area, the more of us that do it....the better & easier it will be for all of us. More importantly is that the public will start to recognise Hughes as a disease to look out for at last.

Great idea too....I'm planning on something similar next year as my hubby is in a few bands so I am hoping to join a few charities together (to make people recognize at least one of them) & do a charity gig in my area....we ar always doing them for : cancer, heart & childrens I'm working on that now!!

We should get them all together!!! :)

Great you are doing this, if you need any advice or help inbox me & I'll give you my no. & we can chat more, good luck & well done :) xx


Thanks Suzy i will inbox you for sure - your advice and help will be greatly received xxxx


Hi Kathy

I've just replied to another one of your messages to tell you that I live just south of Bath and I am already in touch with another APS patient, Daniella, sho lives near me and we are thinking along the same lines as you.

Best wishes.



Hi Dave

Thats excellent news. Do you have daniella name she goes by for this site? just interested to know which consultant she is under at Bath

kind regards



Maybe a APS concert Hire a venue , alkl this fundrasing is great it will all help the awarness of APS



Would love to hear more about a group in the SW, do keep us up to date of any details!


will do thanks for your interest, we plan to meet up in a few weeks to discuss and will keep you all posted ;-) hope everyone is enjoying the sunshine kathy xx


Hi Kathy

I would be very interested in a support group in the south west. I am not very far from Bath. Would love to hear more. Thanks. x


Excellent will keep you posted - will send you a message we will be looking to meet up in a few weeks time over a weekend somewhere in bath. kathy x


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