You may have noticed that a new news article has been plased on the Home page advertising TOFS awareness week from 11th - 18th October.
I thought I would be good to start a thread here that people can put what they are doing that week.

Im not sure exactly what I am going to do yet but Ive left a message with our local hospital to see if I can do something “on Location” which once Ive had a response I will let you all know what Im doing

I hope we can all do something to raise awareness of tof/oa localy and if we work together create a uk wide presence that week

Darrell

hi, ive already marked the tofs awareness week on my calendar and im thinking i am going to get my local paper to do a story about Hugh and raise awareness about TOF’s and im also going to get my old nursery that i used to be manager of to have some kind of raffle, or fun day and raise money for tofs at the same time as making people aware of tofs. thats my plan so far, anyway.

Hi, I’ve got Harriet’s nursery on board, a school where my friend works, a friends business and one friend is kindly donating her birthday presents!!

Am going to mention to my health visitor to see what we can do in the community.

Kay
Mummy to Harriet (25 months old)

HI,

My husband and his friend are planning on doing a ‘10 for TOFS’ run that week (10 miles for TOFS run) will take some organising and we aren’t sure where the run will be yet etc but its in the pipeline!

Louise, Mummy to Benjamin - 13 months TOF/OA 4 dilatations, severe reflux, mild tracheomalacia.

oh i like that idea about getting posters etc it would open up other opportunities as u say at the local dr’s and places like that to help raise awareness, i could pass things like that to all the local nurseries here and hit a bigger audience to raise awareness too.

you know imalways on here jayne! haha yes i had to delete my inbox contents too as it was gettin rather full.

nathans dad, will tofs themselves get it into the national newspapers themelves do u know?, or could that be somethin we could also do ourselves?

I will speak to Diane Monday and see what they are planning

brilliant, thank you

Dear all,
WOW!  I’m so impressed - you lot are on the ball.  I’m struggling to keep up!  Thanks so much for all the enthusiasm and great ideas on here for our Awareness Week.  Please note the week itself is 11-18 October - there’s a few different dates being bandied about - it’s not September as we’ve listed in CHEW (oops) - but really anytime you can fundraise or raise awareness during Sept or October is just great.

One of our trustees has kindly funded a PR lady to do some of this and she’s already sent off a press release to 300 health writers.  There’s talk of us getting coverage in the Mail on Sunday and Marie Claire BUT we could do so much more with you lot on board. 

If you’re prepared to contact your local media I can put an official press release together for you from TOFS.  Just email me (.(JavaScript must be enabled to view this email address)) a brief background about your child - where he/she born, when TOF diagnosed, subsequent problems etc (about 100-200 words) and I’ll email back a press release for you to use.

Posters are a great idea - I haven’t had a chance to even think about these yet so if anyone wants to design something specifically for Awareness Week please do get in touch.  If not, I’ll put something together - probably be early next week.  We’ll probably not upload it here as we want to keep eye on what’s happening and where, but we can email or post these out from the office.

I can send fundraising material or whatever else you may need - just get in touch.  (0115 961 3092)

Many thanks to you all,
Diane

super duper! im gettin excited about bein able to fundraise and raise awareness already, haha

how early should we put the posters and things up? should we wait until just before the awaerness week or would you say to start putting them up as soon as they are ready?

haha, i was just wondering thats all.

will the poster be just for the week for tof awareness week, or will it be on that can be undated and can be kinda left up permantly for all to see, if u know what i mean. cos even when we go to the TOF clinic in hull there is no literature or posters at all about TOFS and i think thts kinda wrong. the info shud be there at easy reach for all TOF parents

also another thought could u put the tofs.org.uk on it so any new parents who don kow about this site will learn about it?

i dont know what to say jayne, except i think u may be talkin toooo much is that is the case, lol.

no probs well ill tell u what, ill email all those sites u gave me tonight and ill see what we hear back, stickin with the story the way we want it told to raise awareness etc, and ill let u know what i hear back tomo. ill be off to bed after that anyway i think.

Hi everyone,
just letting you know that jayne and me have managed to get us into ‘pick me up’ magazine. they are going to feature TOFS on their health page and do a big write up on it. theyre not too sure which magazine it will be out in yet but watch this space and we will keep you informed.

thanks jayne, but remember you were the one who came up with the whole idea and found their email, i just ran with it.

oohhhhh another great idea!
see they just keep coming

but yes if someone else would be willin to to send an email to one of the other mags they could also do a story for them too, telling them about the journey ur child has been on so far, all about what TOFS is and to raise awareness for it.