any1 knw hw i can publih my story 2 raise awareness n money 4 the foundation....

[rach1081985]

[Hidden]

Hi Rach

Weirdly enough I have a journalist asking for a patient in her 40s to get their story into Candis magazine. Can you email me directly on [e-mail] so I can get our media volunteers questionnaire out to you. If you don't fit the bill this time, we keep you on the database as a 'case study' for the future.

Kate

[MaryF Administrator in reply to Hidden]

You can also count me in, with pleasure! MF

[Hidden in reply to Hidden]

Kate, I would like to be considered too !! Any research or candidates and volunteers - count me in !!!

Julie

[Hidden]

Thanks MF - I will email you directly about this.

[jessielou]

Hi

would like to help too!!

Hugs sheena xxxxx

[rach1081985]

Thnx kate already dne media volunteers thing jst wondred if anythin else i cld do

[paddyandlin]

@ Rachel, some times it might be worth talking to local papers in your area about your situation and see if they would be intrestred in doing a story i cannot hurt and i am sure if one says yes that between Kates info etc we could help you. This is sometimes a better way than HSF doing it becasue its a local person and a local story which local papers radio etc love . Let me know wat you think.

@ Kate did i fill in one of those forms lol i cannot remmeber if not can i have one please lol

paddy

paddy

[Hidden]

I took my story to my Local Paper and they published an article on Hughes Syndrome. Unfortunately raising money was not mentioned but I am thinking of contacting a national paper where I have contacts and hopefully raise some funds-I am working on it at present. Will keep you posted.

[Hidden]

Thanks Julie-Anne and Sheena - please email me directly on [e-mail] so I can get our media volunteers questionnaire out to you. The more people we can get on the database, the better.

Paddy's idea of contacting a local paper is a very good one and the charity always has any supporting info you might need including a factsheet for journalists.

Julie-Anne - please let me know if you get anywhere with your national contacts and if you want any help. We have links in with the Telegraph and Independent - strangely enough both the journalists have Hughes! And also have radio and TV news contacts around the country.

The charity is holding back doing a big publicity campaign at the moment as we want to get our new website up and we are also focus on raising awareness amongst GPs and front-line hospital staff so we can eventually get some NICE guidelines. There only so much one person can do However, if anyone wants to take the initiative in the meantime, please feel free and be assured you will have our support.