Crikey, crikey, crikey. Things are starting to fall into place, thanks to some very fantastic support all round. We have had great coverage in the Craven Herald, Keighley News and Telegraph & Argus - MASSIVE thanks to all involved. Evan took his new found "fame" all in his stride, as ever. Lynda is starting to pick up the work related to the fundraising ball which we hope will be brilliant, but a big undertaking for her and her organising team. Not only will this hopefully raise some ££££ but will be a good celebration as well. I've got a few bits and bobs on the go - my "big fundraising thing" which is very nearly ready to publicise - just need to dot a few i's and cross a few t's, a 24 hour sponsored snooker thing with the lads up at the Sunnybank - which will have a competition element as well (more dots and crosses before can publicise - please bear with us) and also a gig in January next year - which we hope we will be the icing on the cake and be the final fundraising event, so an excuse for a bloody good party... http://www.the-syndicates.co.uk/ will be playing for us.
In terms of the op, we have received the paperwork from the wonderful team at St Louis and are just working through it.
Right, off to bed... - we are in the middle of a very much needed two week break (even if I do say it myself) and it has been great to spend some time with the kids. Took Evan and Maya to Ella's birthday party today, which was great - while Sam went Motorcrossing with Loup. He was full of it when he came back. He's really come on these last couple of weeks. Cant believe he is starting school (well, nursery @ Aireview - so just half days) in a couple of weeks. (£28 for school shoes...???... but dont get me started on that). Maya has been doing the real summer holiday thing of playing out until late and then just collapsing as soon as she comes in. All good fun.
Sunday, 22 August 2010
Wednesday, 11 August 2010
Going potty
erm, where to start.... It's been a bit hectic - even by recent standards - got a couple of weeks off work shortly and we all need it. Time to do some chilling, and have some quality time with the kids... The walk was brill - just what we hoped for and we beat the rain (and I got to have a pint with THE Dynamo Joe! - who is going to help us out with a couple of things, such as a mass 3 peaks walk on 24th September - more details to follow). Other events are really starting to pile up. One of the things that is really coming together is a Charity ball - if you want details, please get in touch with Lynda - but tables are already starting to go, it's going to be first come (with the cash), first served.... We never expected so much demand - so we do really really really apologise for anyone who is disappointed. Another thing is my big Christmas Raffle. I hope to be able to "launch" this the week after next. Our friends are back from Spain now - think we have managed to leave a little bit of activity for Wayne to sort out ;)
I have also got things coming together for a gig. Check out www.the-syndicates.co.uk - they will be playing for us at Sunnybank Social Club (Silsden) on Friday 14th January 2011. Im really hoping that we can have this as an "end of fundraising party" - just need a few things to come together and to get across the line.
Lynda is trying to keep up and put events on the Facebook group and we are going to try and keep the website updated for those folks not on there.
As ever, we are amazed (but maybe we shouldnt be) at how much time and effort people are willing to expend on our behalf. It's truly heartening - and in "the current climate" you wouldnt really think it would be easy getting people to part with money but it's happening. We are very lucky.
I have also got things coming together for a gig. Check out www.the-syndicates.co.uk - they will be playing for us at Sunnybank Social Club (Silsden) on Friday 14th January 2011. Im really hoping that we can have this as an "end of fundraising party" - just need a few things to come together and to get across the line.
Lynda is trying to keep up and put events on the Facebook group and we are going to try and keep the website updated for those folks not on there.
As ever, we are amazed (but maybe we shouldnt be) at how much time and effort people are willing to expend on our behalf. It's truly heartening - and in "the current climate" you wouldnt really think it would be easy getting people to part with money but it's happening. We are very lucky.
Saturday, 7 August 2010
Another great week ! ~ more to come !!
Another great week, supported by great people. The latest delivery of (300) wristbands have arrived and been distributed - just waiting for the proceeds to roll in (should make £1000 from these) - apologies for not getting them to everyone in the quantities that you needed. However, we do have a MASSIVE order (3000!) on the way - eta end August. Why do we need so many ? - well, watch this space but we have a really great opportunity (and 3000 might not be enough - crikey!)
There are a couple of massive things in the pipleline. My own personal project is coming on really well and we had an unexpected and amazing piece of news during the week to help with this. Again, watch this space - the target for this is £20k. We will need everyone's help on this shortly.
We are also very hopeful of the opportunity to host a Fundraising Ball in November. If you are interested in taking a table (most likely £400 for table of 10) let us know. However, still early days - more details to follow.
As well as these big things - it is actually the individual events which are really heartening. Ged's 3 peaks walk, T-dog's bike ride, Mike H 3 peaks run, Gary swimming a loch, Grandma Skipton's DVD's, QUINGO, Race night, Clive and his mates from the branch planning a 56 mile run, the coffee mornings, other sponsored walks and the other ones that I have certainly missed off (sorry - im writing this in battle-conditions, being jumped on by Sam while Evan re-enacts last weeks "101 ways to leave a game-show"). Not to forget the engine room back at work - which is all the people helping to sort things out and the people who are picking up my "day job".
Finally, hope to see you this afternoon. It's important to us that we keep this personal and that everyone gets a chance to interact with Evan (and Maya & Sam) and that he gets to see the people who are involved. However, if you cant make it - please dont worry, there will be plenty of chances to come.
Thanks again !
There are a couple of massive things in the pipleline. My own personal project is coming on really well and we had an unexpected and amazing piece of news during the week to help with this. Again, watch this space - the target for this is £20k. We will need everyone's help on this shortly.
We are also very hopeful of the opportunity to host a Fundraising Ball in November. If you are interested in taking a table (most likely £400 for table of 10) let us know. However, still early days - more details to follow.
As well as these big things - it is actually the individual events which are really heartening. Ged's 3 peaks walk, T-dog's bike ride, Mike H 3 peaks run, Gary swimming a loch, Grandma Skipton's DVD's, QUINGO, Race night, Clive and his mates from the branch planning a 56 mile run, the coffee mornings, other sponsored walks and the other ones that I have certainly missed off (sorry - im writing this in battle-conditions, being jumped on by Sam while Evan re-enacts last weeks "101 ways to leave a game-show"). Not to forget the engine room back at work - which is all the people helping to sort things out and the people who are picking up my "day job".
Finally, hope to see you this afternoon. It's important to us that we keep this personal and that everyone gets a chance to interact with Evan (and Maya & Sam) and that he gets to see the people who are involved. However, if you cant make it - please dont worry, there will be plenty of chances to come.
Thanks again !
Tuesday, 3 August 2010
Just another day...
An interesting day today - started the same way as usual (kids, bedlam, tired) and ended the same way as usual (kids, bedlam, tired). However, in between there was so much good stuff. Had a bit of a quiet start (did a bit of design work on my big idea ~ more on that in due course, but it's all starting to come together) then took Evan into work to meet Loup at work and introduce him to a few of the people who have heard so much about him. He was on absolute top form - if we had coached him to be a perfect advert for his campaign we couldn't have done it better - but we didn't, that's just him.
We then had an appointment at the hospital - his annual check-up with his orthopaedic surgeon. I was a bit worried about it and that they might try to warn us off, as the treatment is so unknown over here. Couldn't be further from the truth. When I said the expectation that we had was that he might walk unaided, the reaction was simple - they just nodded their head as if to think it was perfectly normal. It all seems so surreal but I don't think we are dealing with magic beans here. Still need to be aware that it's a long, long road and going to be hard work for everyone involved - not least Evan.
Well, back to it. Probably need to pop by and say hello to Loup who is now sorting passports out... Looks like the wristbands are somewhere between Leeds and Birmingham and, with a fair head wind up the M1, might be with us tomorrow. That said, they are flying out and I may need to ration them - apologies if we cant give you as many as you would like. However, the next batch are due to be ordered straight away and this time - it's a seriously big order.
Thanks again for everyone's support - it's getting to the point where we have pretty much lost track of exactly everybody who has played a part and the spreadsheet that we tried to keep up to date is well behind track. We know who you all are though.
We then had an appointment at the hospital - his annual check-up with his orthopaedic surgeon. I was a bit worried about it and that they might try to warn us off, as the treatment is so unknown over here. Couldn't be further from the truth. When I said the expectation that we had was that he might walk unaided, the reaction was simple - they just nodded their head as if to think it was perfectly normal. It all seems so surreal but I don't think we are dealing with magic beans here. Still need to be aware that it's a long, long road and going to be hard work for everyone involved - not least Evan.
Well, back to it. Probably need to pop by and say hello to Loup who is now sorting passports out... Looks like the wristbands are somewhere between Leeds and Birmingham and, with a fair head wind up the M1, might be with us tomorrow. That said, they are flying out and I may need to ration them - apologies if we cant give you as many as you would like. However, the next batch are due to be ordered straight away and this time - it's a seriously big order.
Thanks again for everyone's support - it's getting to the point where we have pretty much lost track of exactly everybody who has played a part and the spreadsheet that we tried to keep up to date is well behind track. We know who you all are though.
Friday, 30 July 2010
Walk for Evan - Saturday 7th August - 4pm - Aireville Park
The last few days have been really great - overwhelming (my new favourite adjective), but great. However, one thing that we are keen to ensure happens is that we involve Evan in as much of this as possible and that everyone who wants to, gets chance to meet and speak to him. It's amazing that so many people have got involved and given time, money and effort and they havent even met him. So, we have decided to arrange a "Walk for Evan" next Saturday (7th) at 4pm in Aireville park. Meeting up at the swimming pool car park and walking down towards the play-area. Literally, a couple of hundred yards. So it shouldnt take more than an hour of your time.
It isn't a fundraiser (although there might be some buckets there....) and is partly about awareness, but it's mostly about having the chance for Evan to meet the people who are joining him on his journey. Its also an opportunity for our various groups (work, family, friends, etc) to intermingle. Oh, and by the way - we wont be far away from Herriots - so the "networking" might gravitate towards there....
In terms of the awareness bit, we are hoping to get some local press coverage and take some photos, video, etc. To that end, we thought it would be a nice idea for people to wear either something blue or something orange (matching the the colours of the logo on his website). If you need something orange, the next batch of wristbands (minimum donation £3...) should hopefully be available ;)
Please feel free to join us ~ if you are near Skipton it should only take an hour or so out of your day. It would be great to make this a real "personal" kick-off to the journey.
Fetch the kids, they can play in the park. Fetch other adults, they can play in the pub.
It isn't a fundraiser (although there might be some buckets there....) and is partly about awareness, but it's mostly about having the chance for Evan to meet the people who are joining him on his journey. Its also an opportunity for our various groups (work, family, friends, etc) to intermingle. Oh, and by the way - we wont be far away from Herriots - so the "networking" might gravitate towards there....
In terms of the awareness bit, we are hoping to get some local press coverage and take some photos, video, etc. To that end, we thought it would be a nice idea for people to wear either something blue or something orange (matching the the colours of the logo on his website). If you need something orange, the next batch of wristbands (minimum donation £3...) should hopefully be available ;)
Please feel free to join us ~ if you are near Skipton it should only take an hour or so out of your day. It would be great to make this a real "personal" kick-off to the journey.
Fetch the kids, they can play in the park. Fetch other adults, they can play in the pub.
Wednesday, 28 July 2010
The start of a big journey
Wow - what a 24 hours.
Even though we promised ourselves we wouldnt, we maintained a vigil of the gmail account. However, we called it a day at 10:30pm. If only we had waited 25 minutes, for at 10:55pm we received an email from the wonderful people at St Louis Children Hospital. Basically it said, "we feel that Evan is an excellent candidate for the rhizotomy surgery and that the permanent reduction in abnormal muscle tone will help him very significantly. " and "If he has the surgery we expect the following improvements: ~ (including) he will walk independently in protected environments and may need a cane in the outdoors and community.". Absolutely fantastic, overwhleming and truly, truly, life changing.
When we told Evan his reaction was, "well - thats a bit mixxy - im very nervous but also excited" and "are we going today?"
Facebook, phones, blackberry and mobiles went into overdrive and work has been manic - but fabulously manic.
So, it starts now - we have a few plans and we need to get organised in terms of co-ordinating events. It's going to take a little while for the news to settle in and for us to get our heads round it. However, we will provide more details soon - then we will definitely need some helpers. From the messages we have received already, we know we are so lucky to have such a good supply to hand.
Thanks for everything so far - it's going to be a long way so let's get going.....
Even though we promised ourselves we wouldnt, we maintained a vigil of the gmail account. However, we called it a day at 10:30pm. If only we had waited 25 minutes, for at 10:55pm we received an email from the wonderful people at St Louis Children Hospital. Basically it said, "we feel that Evan is an excellent candidate for the rhizotomy surgery and that the permanent reduction in abnormal muscle tone will help him very significantly. " and "If he has the surgery we expect the following improvements: ~ (including) he will walk independently in protected environments and may need a cane in the outdoors and community.". Absolutely fantastic, overwhleming and truly, truly, life changing.
When we told Evan his reaction was, "well - thats a bit mixxy - im very nervous but also excited" and "are we going today?"
Facebook, phones, blackberry and mobiles went into overdrive and work has been manic - but fabulously manic.
So, it starts now - we have a few plans and we need to get organised in terms of co-ordinating events. It's going to take a little while for the news to settle in and for us to get our heads round it. However, we will provide more details soon - then we will definitely need some helpers. From the messages we have received already, we know we are so lucky to have such a good supply to hand.
Thanks for everything so far - it's going to be a long way so let's get going.....
Friday, 23 July 2010
Great start (before we have even started)
An interesting week...our main concern throughout has always been to wait for, and hopefully receive, the "ok" from St Louis. However, how things have progressed this week has been phenomenal. Loads of great support from loads of great people. Too many to mention here, for now...
Last night's SBS IT Quiz was great - although it was the first "event" I have attended for Evan's Big Journey, and im not really one for "centre-stage"... it was great though (as expected ~ they always are) and in the end we made £912 from the raffle, "Super Reverse Bingo" and a few other bits. Brilliant!!! We have actually now raised more than £2000 and we havent even started yet...
For those of you who have helped, Evan has created a little something ~ please feel free to take a look (requires Facebook....) ~ simply click on the link below:
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