Hi all,
Just letting you know I am travelling down to Corby today & I'm being interviewed on Corby radio on Friday!!!!! I hope I dont let you down......I've got all the info' with me, I'll say as much as I can condensed & I hope I get the word out!! it's a start 
Then with Derbyshire's council's help I will be going to other areas to do as much as I can do!!!!
Hugs to all xx
Oh Well Done Suzy!! Wish I was in that nick of the woods or I would tune in.
Good Luck and will be thinking of you x 
Love the picture!
thats our princess- go get them girl , put on them high stepping boots and WOW them all, you will do just great. i only wish i could tune in , gotta go for blood then back home for a few , then of to dartmouth , 5 appointments up there today , big going ons, ill check for reply when i get back -- about an hour , if i dont hear from good luck but you wont need it , you will make us proud.----- your biggest fan .
Well done Suzy Don't forget the Fact Sheet for the journalists and do mention the charity if you can!! Wishing you lots of luck - I will let you know if we start getting lots of queries from the Corby area x
Yes I'd like to know if it made a difference thanks xx
This is great news, well done you, wish I could hear it... however you can normally get local radio if you go via the internet - What time.....on Friday, I will try and listen xx Mary F
Hope you get to listen in....I'm hoping it might get recorded at some point...hate the sound of hearing myself tho'!!!!
Cheers hun x
Not sure what time, I have to be there at 11 - 11 30 am but they will record it first then cut out any thing that I stutter with or say wrong!!!! I presume it will go on the same day? I will ask when there & if I can come back on here in time to let you know I will oir if I manage to have a recording or anything?? oer......I do hope I say it all right!!
Kate I cant remember having a journalist fact sheet?? I have the leaflets with lots of info' condensed down well plus our Hughes website address which i will keep pushing!
If you have a link or get it to me today via email I can get it written up ready?
Hugs to you all xxxx
Gosh well done, wish I was brave enough to do things like that.. I am sure you will be great, we will all be thinking of you,
Good luck
Karen xx
hay princess- i clicked om Marys site and i can get it , HORRAY ill have to try to figure time difference, you will have to let me know as soon as you can !!!!! your biggest fan -------------------------- me
hay -i have always liked the sound of your voice, i dont hear any problem with it. its this friday rite, ithink its a five hour diff.what time isit thererite now ???? me
Good luck Suzy, your a star!
Best regards
Garry
Hi been to the radio station......I got very nervous & flustered so I'm hoping I said what needed to be said.
He was very nice & redid a few things, but when I left I'd wished i'd said more, didn't say somethings .
I just hope I did everyone justice & not fluffed it up too much .
I don't know exact day it's going on but he said itwill be next week & he'd let me know, I tried & I put posters around Corby too.
Hugs to everyone as always xx
good mornig -to our newest celebrity , i-know how you feel about after thoughts, i would get so upset about spacing some things out at the moment , when i wanted to remember them the most ,and kick my self in butt. im sure you did fantastic- your friend --jet ps. how about an autograph??????
o-boy thank you my pincess-- ill never change my screen. im the luckiest man in the country. your pouper servant -------------------- Benny jet
Hi Sue,
Only just seen this as not been on for few days (sorry)
Well done you I am sure you were brilliant.
Thanks for your hard work.
Not sure about being a Pouper Servant Jet! Poor Suze!
Lots of Love your Animal Mad Friend
Thanks Sue!
Thank you for your support! I just know there were a couple of things I didn't get out like I should have 
I did plug the Hughes charity & web site for more info' but I felt it was weak on the answer to what is done by authorities / hospitals to raise awareness?!!
Oh well....I'm ready for the xt one now!!!!!
dearest -sue not a bit of negativaty- if you took it the wrong way im sorry, i think what our suzy is just so fantastic, it is unbelieveable , i have met some many positive people from the u.k. , my start from you guys over seas has been nothing short of a miracle. my sence of humor may leave alot to be desirable. but my heart is in , i think the rite place . if i have any way offended any one ---- my whole felt apologys. thanks to the site that Mary left on our suzys site-----!!!! i can listen to colby radio on my comp.!!!!!!!!- even that there is a site for a requested song ?? that is just { yaaaaaaaaa ]. ill have to try it - hay suzy -i think i will do the operation , it was a hard one , but after a lot of feed back from the ones that mean the most, im in - i will let you know the rest as it falls into place this coming week. cross your boots and hope for the best . no servant - just your friend --- j--
I'm sure Sue didnt think anythin bad matey, just a bit of banter
I know you are my no.1 fan
I'm glad Mary's left a link to the radio station, bit nervous tho' now as I know I got confused & flustered & you'll all hear it!!!!!
I'll get better on the next interviews too, I'll keep you all posted! xx
I might be being a little daft but I cant find any link ?..........
Here you go x corbyradio.com/
thanks Mary ,since i just read Suzy s note that she coulnt find it ,i thought its rite ??? then i couldnt find ,talk about {BRAIN CRAMPS }- this time i will add to comp. thanks again your a life saver------------------------ jet
suzy------------ ---- just did survey on corby radio- asked where im from ?-told them- -- why i listen ? told them to her our suzy, and there would be people here in the states and for that matter the world!!- where ever there is people affected with hughes. !!!!!!!!! listening Elanor on radio--- jet
Wow...bet they liked the idea of all over the world listening?!!!!!!
Oh my God....now I'm really nervous with my stumbling words, brain cramps etc!!!
Glad you managed to tune in then
well hon this is a world wide problem, and if they know that their listening range is going world wide because of your efforts , commitment, and the want to make a change. and bring our plight to a higher level of awareness. they should be willing to give you all the time you disire.. great job hon- when i saw the survey and started reading it- you really didnt expect me not to seize the opertunityandlet them know just what this means to you. and take heart knowing its a good thing in my opinion, if you were a little nervous -people will respect the fact that you are a person of everyday life with a passion to make a difference in the world ,not only for yourself ,but for all of us . again a big THANK YOU this could be just what we need. i am very impressed as i teach to large groups and at first its not an easy thing- but you do have what it takes my friend- so dont worry .people will accept you with open arms-------------------- jet
with all us sludge bloods around the world listen in an with the site mary gave us all !! and we e-mail them with our comments - this could be a big eye opener to the corby station but lots of others. heck you could make the big news media.wouldnt that be something. who needs celebrities- we would have our suzy.---------------------------what do you think ??????????????????--jet
i sent a request to Corby station for a dedication song -- guess who the dedication was to ????????????and what might that song be????? only the shadow knows???????????????????????????????????? jet
no i dont they havent said ? so i have been listening since this morning!!-actually i just did another request? just a half hour ago .
they just played it - to sue from j-- a helen reddy song. o god you missed it
Just contacted the radio station & it's going on Friday, waiting for the time to be emailed to me, but I'm assuming it will be in the afternoon as that's when Stewart's show is ( the guy that interviewed me! )
Sorry Jet you misconstrued my British sense of humour. I love your idea of being 'Sludge Bloods'!
Will try and get on to listen on Friday Sue
xx
ha miss suzy- any word on the air time , im still all excited , get back my famous one !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! just simple me
Going to message him now bud
Been & seen a man to do with the Derbyshire council today, they are going to help me raise awareness
He has given me tips & ideas about funds I can get to help out with it all, places to hold events & they will help me too! A which m.p's to get in touch with to make it bigger!!
He couldn't believe how much I have already been doing & the impact it has from just one radio station so far!!
He didn't believe that the % of people with APS is higher than those with MS......he said it was an eye opener & he is offering any help he can give to raise the awareness needed!
Did you get to hear it bud?
I recorded it on my phone but when I try to blue tooth it to comp' it doesn't transfer the sound?
They said they will send me a link but still waiting!! but then again I'm still waiting for the paper to do that too!!!
I'm making more phone calls (all being well with head doing what it keeps doing ) & see whats next & whos going to help me make more awareness!
finally after much research, I think I might have found a doctor!!
My name was Firefoxie on here but I had lost all names and contacts. I also had not been online because of health issues.
Home, not yet 
Apologies for my absence :(
The sticky blood Explained relaunch
