he did it....

Mike did well...63 minutes and 10k later there he was all happy, sweaty and tired and raised about £165 for the CBTRC.

Before

After

well done Mike we're really proud...first 10k run (for real) and a medal all on a sunny morning!!



he's limbering up!!

He's limbering up and getting ready to go!!!! Whoop whoop!

Sun's shining, blue sky and no wind!

We'll be piling in the car and away in 37 minutes.....flag up at 11. :o)

Go get 'em Mike.

mimmx

Busy few days ahead

It could be watch this space next week...we have a busy few days ahead of us.

Sunday is Mike's first 10k run, there is a run on the new road here before it is open to traffic, I had asked the construction company a long time ago if they could support the CBTRC...sadly the answer was no, however at least this run will give us ~ well Mike actually~ the opportunity to raise funds. Thanks to all those who have already used the just giving site, excellent stuff!!

Sunday also sees the local Awards ceremony to which we have all been invited, looks like Sam may be in with a chance of something!

Monday is the launch of Nottingham University's Impact Campaign we have been invited to take part - this should be a very interesting week of events and hopefully raise awareness of all that the University is part of.

"Help us change lives. Tackle global issues. Shape the future"

This is quite a campign and I hope lots of people take the opportunity to see the work the University does not just in the field of medicine, although that of course is our link. If you can't be there have a look on the websites!

So, much to do, lots to see and interesting times for us all.....will keep you "posted"!!

mimm

jimmyteens have done it again!!

well, here we are october....how fast is this month going!! Sam is having a busy time over the next few weeks...well so is Mike with his 10k run, has anyone sponsored him yet?? Think the station have pledged £35 so far..thank you all and Sam has offered his dad a quid ~ nice one Sam!

Jimmyteens.tv have posted the 2nd film recording Sam's amazing journey....I'd love you to have a look see how far he has come, if you saw the first one this is even more!! Well done Peter and Debs x

And for those who helped in the rescue mission when puppy was lost in the laundry in Sheffield here he is -  surgery completed and successful

So following on from "an hour to live" here's "the last thing to come back was his smile"   www.jimmyteens.tv  please have a look and feel free to comment

mimmx

Mike's got his place!!

The postman has just been and Mike has his place in the 10k run next month. He is number 161 in a field of 800 and looking forward to his first organised run on the 16th of october.

He is hoping to raise a minimum of £161 which will go to the CBTRC.

If you would like to put a quid in the kitty that would help loads!!!!

You can donate online  at www.justgiving/pam-white0

mimm

time to catch up

It's been a while since the last blog, Prof Walker has been on his Bike ride and helped to raise lots of money!!

Sam has been sailing with the Ellen McArthur cancer trust and had a fantastic time. It seems he got up to lots of things a nervous mother wouldn't allow.....just as he should!
It's worth a look at their website to see what amazing adventures the youngsters have, the experience and confidence they gain and all down to Ellen and her team. We have seen the difference the trip makes it really is a marvellous boost for the teenagers, Sam can't wait to go again next year!!!!

We have also just had word that the first of the videos has been put on the jimmyteens.uk website.

http://jimmyteens.tv/2011/09/an-hour-to-live/

Peter and Debs have produced  a very powerful film here, and if you have time to have a look and let us know what you think that would be great. The next one will go on line soon, I'm sure I'll post a prompt!!

Mike is also in training big time, he is hoping to do his first 10k run next month, I will definitely post that and let you all have the chance to sponsor him if you like!! How kind x

That's all for now but thanks for hanging in there during the quiet month

mimm x

not everyone is as lucky as me

Not everyone is as lucky as me is the new film on http://www.jimmyteens.tv/ 

It is the film of the visit to the European Parliament in Brussels by Sam and Peter. Go on the link and have a look ...see what you think.

Let us know if you have any comments

These two did so well, I know this is an edited version of that day but it gives an accurate view of the interest generated and the the reception by those present.

mimm

link

Here's the link to support Prof Walker's mammoth cycle ride!!

www.justgiving.com/davidwalkerlifecycle


We saw him this morning and have pledged our support...see if you can spare a pound to boost the donations!! Go on!

Every pound helps in an amazing way...and of course we should know!!!

Good luck Prof and we hope the saddle is kind........

mimm

Professor David Walker of Children’s Brain Tumour Research Centre would like to draw your attention to his participation in the Nottingham Life Cycle from John O’Groats to Lands End.                 



I am cycling from John O’Groats to Lands End from 26 August until 8th September 2011 with the Nottingham Life Cycle, that is 1018 miles in 14 days!.
I am supporting the Sue Ryder Care Centre by participating in the ride and initiating a research programme with Professor Jane Seymour, focussed on the needs of Teenagers and Young Adults requiring palliative care, as part of the new centre’s strategy.
I am helping with fundraising for Children’s Brain Tumour Research Centre on 3rd September on The Nottingham Leg of the Nottingham Life Cycle from Retford to Sutton Bonington Campus plus there is also The Community Life Cycle from Nottingham University Park Campus to Sutton Bonington, when we will be promoting awareness of HeadSmart - Be Brain Tumour Aware Campaign.

http://www.cbtrc.org/cbtrc/documents/life-cycle-poster.pdf /    http://www.cbtrc.org/cbtrc/newsandevents/events/the-nottingham-life-cycle.aspx

What can you do?
You could sponsor the Nottingham Life Cycle fund for Sue Ryder Care Centre or the Nottingham Leg of the Nottingham Lifecycle for Children’s Brain Tumour Research Centre fund to support the HeadSmart Be Brain Tumour Aware campaign
You could join The Nottingham Leg of the Nottingham Life Cycle from Retford to Sutton Bonington Campus or you could ride The Community Life Cycle from Nottingham University Park Campus to Sutton Bonington. 
I would love to celebrate with you on the day at the free BBQ to welcome all riders to the Sutton Bonington Campus.
You could read my daily blog on CBTRC Twitter or Facebook, send me a message along the way from John O’Groats to Lands End.

The Community Life Cycle
Open to all and ideal for families, the Community Life Cycle is a community fun ride covering approximately 14 miles, as part of the wider Nottingham Life Cycle challenge.
Saturday 3 September - 12.30pm start Approximately 14 miles from our University Park Campus to our Sutton Bonington Campus Open to all and ideal for families
£11.50 entry for adults, £6.50 entry for children (aged 10 and over)
 Includes celebratory BBQ upon arrival at the Sutton Bonington Campus Includes transport from the Sutton Bonington campus back to University Park campus after the BBQ, where connections into the city centre are available

The Nottingham Leg
If you fancy a challenge, why not get on your bike in aid of life-changing research?
Saturday 3 September - 10am start Approximately 53 miles from Retford to our Sutton Bonington Campus
Open to all keen cyclists and sports enthusiasts (aged 18 and over) Entry is free and all riders are encouraged to raise as much sponsorship as possible Includes celebratory BBQ upon arrival at the Sutton Bonington Campus Includes transport from the Sutton Bonington campus to the University Park campus after the BBQ, where connections into the city centre are available

another thank you!

Here is a thank you for raising more money for The Children's Brain Tumour Research Centre.

My Godmother sadly died a few months ago, her sons kindly decided that there would be donations for the CBTRC at her funeral...I think she would have been very proud of them.

So thank you to everyone who gave a contribution/donation a sum of £378 was raised, an amazing amount from very generous people, thank you all.

And a special thank you to Tony, Mike and Paul for thinking of such a good cause.

mimm x

An evening of wine at Ann et Vin

We had a great evening with Ann (of et Vin fame) tasting wines, guessing which they were and generally schlooshing! This schlooshing is quite a difficult thing to grasp.....wine in mouth, roll it around, make lips into a sort of "cat's bottom"and breathe in making a strange schlooshing noise. Got it?? are you trying as you read?? you should be!!

This is all well and good if you don't want to smile, giggle or talk at the same time, then it's disaster....and always with the red wine which trickles quite quickly down your chin and onto your clothes!! Hey ho all in the name of pleasure and raising money of course....that's the reason we were all there!!

And thank you everyone we raised £355, and enjoyed every minute, thank you Ann you did us proud ~ and I had several comments that this was a marvellous way to raise money for charity this amount is winging it's way to The Children's Brain Tumour Research Centre in Nottingham.

 

Thank you too to Mike Wilson who was having a leaving party at Ann's before we arrived for our "do"and made all his guests put money in the collecting bucket as they left, Sam was quite happy to stand there and have money tossed in his direction!
Sorry  -  we didn't get a photo of you ...whoops

See if you can see you or someone you know amongst those who supported us on the evening, and thanks to all once again....I think we may have to have another one of these evenings before too long!!





Thank you Ann for the two great quizes, excellent wines to quaff...after tasting of course!!....and the pate and cheeses. And also for providing a lovely prize for the winner of the quiz....you are a star Ann!!!! And we will get you in the picture one day :o)

 

 http://www.cbtrc.org/

 www.justgiving.com/pam-white01

mimm

Holiday

Thanks to Luke Tillen and his team at the Torbay Holiday Helpers Network they gave us a wonderful holiday a couple of weeks ago.

Luke founded the network and he and his fellow hoteliers offer free holidays to families who have a child with a serious illness, either still receiving treatment or up to two years post treatment. They also offer holidays to bereaved families. Luke has also persuaded various cafes, attractions, cinema, theatre etc to take part and they provide free entrance or lunch/tea....how generous is this?!!

We had a great week in Babbacombe at Luke's hotel and visited a great many places....and had good weather!

Sam decided to interview Luke and chat about the THHN, here it is below...

apologies for the background noise, it proves this is a hands on role for Luke!! and I think one of the girls may have been playing the spoons - hoping to get into cabaret maybe! Anyway well done Sam and Luke...

 

http://www.thhn.co.uk/


mimm

European Parliament Workshop on Rare Cancers

So, there we were on Tuesday morning heading off by Eurostar to Brussels!!

Sam had been invited to the workshop by Glennis Willmott MEP - remember the blog earlier this year? - and was going to speak, along with Prof David Walker, about his journey through cancer so far.

What an impressive building, and how kind everyone was. Sam was impressive too and hardly seemed nervous at all, Debs and Peter from Jimmyteens.tv were also there.
Peter was  giving a talk about his experiences and Debs filmed both him and Sam so will post the link to that at a later date.  

There were quite a number of MEPs in attendance and I hope they listened to the message and try to persuade the drug companies to do more research into drugs and dosages for use in child cancers. It is worrying that the dosages used have not been designed purely for use by children and as a parent I know the worry that can cause. It is important to use what is best and most effective of course, and there is obviously not the incentive to develop drugs purely for childhood/rare cancers as, by their nature they are less common than those in adults, but we need more specifics when treating children. Our children. The balance needs to be right ....a high enough dose to be effective , but not so high as to then cause ill effects.

So come on you pioneering scientists, jump on board and look at what you can do for our children and young adults!!!!

The feedback from those there was wonderful and thanks to all those members who attended, also to Edel who took us under her wing and made sure we were well cared for for the rest of the evening.

Finally we went back to Parliament on the wednesday and had our own tour of the building, thanks Ted. It really is an amazing place and I was impressed that all those we met had time to listen as to why we were there and offer their support. 

And Glennis, we hope we meet with you again and thank you for listening, your team both in Brussels and UK are wonderful and it was lovely to see you "in the office"  I think I am safe in saying you have Sam's vote!!

Oh my!!

Well blog has been a bit quiet lately I know....we have just come back from a weeks holiday in Devon, thanks to the THHN -more about them and their generosity later!!

But now here we are packing again! Tomorrow Sam is off to Brussels .....he has been invited to the EU Parliament in Brussels to take part in a workshop on Rare Cancers and will be taking the stage to talk about his condition and treatment etc....Wow!! Sam is taking all of this in his stride...as usual and looking forward to being there......just how proud are we???? He is just amazing!

So, will be reporting on that trip soon too.

Thanks to Glenis Willmott for inviting Sam and for being so kind and listening to Sam when he showed her around the QMC hospital earlier in the year, we look forward to seeing you again tomorrow.

Bye for now....must dash, packing to do!!! 

Mimm

Thanks Keith and ward sister janet

Sam had a great invitation (along with some other patients of E39) today.

He was invited to the National Hovercraft Championships at Holme Pierrepoint and had the chance to meet several celebrities and have a go in a hovercraft.

This was thanks to Keith and his colleagues and also sister Janet Ward Manager of Ward E39 at The Children's Hospital QMC Nottingham.

Amongst the famous was Carl Froch even tho' it was his son's first birthday....
so after a bit of a photo shoot...Sam is now rivalling the celebrities at this!!! ...it was time to have a go in the machine.

If Sam's face was anything to go by it was a fantastic experience!

There will be a collection over the weekend to raise funds for the Nottingham Hospitals Charity and E39 will benefit from this. So, if you are around the National Watersports Centre pop down and have a look enjoy the celebrity races on sunday and say hello to Janet who should be there around 4pm if not before. This is a National event so all the stars of hovercraft should be there too, it's speedy and exciting, so go along!! And support them and E39.

We spent a long time on E39 and the care is exceptional, all the staff are trained not just in nursing but also in neuro care, they are dedicated and loving and laugh more than you would ever imagine! And we always say hello on our outpatient visits cos they shared our life when things were desperate, worrying, funny and downright amazing! So the more money that is raised the more difference will be made to those who follow - both children and parents and it will help to make their stay on the ward more comfortable.

Here's Janet

Playleader Julie

                                                                                     and Carl

 The Celebrities and Sam!!

Carl, Sam and photographer

So go and support them on Sunday if you can

mimm

great excitement

Oh wow!! Great excitement Sam has been invited to take part in a conference on Rare Cancers in Brussels at the European Parliament! He will be "up there" and speaking about his experiences and difficulties....how fantastic  -  and how proud is this mum!

We shall be off next month, and have a night in Brussels too. This will be just such an experience for Sam and springs from the tour he conducted around the ward etc at QMC with Glenis Willmott the MEP, (there is earlier footage and blog of that event.)
Peter from jimmyteens.tv will also be there and the two of them have the last slot on the agenda so the delegates should leave with these two strong in their minds!

Tickets are booked and hotel reservation made....just have to brush up the speech!!

And finally just to let off a bit of excitement whoop whoop! Sam you are remarkable and a great ambassador/champion for The Childrens Brain Tumour Research Centre

mimm

kerrang!

Sam was invited to Kerrang! radio station last Tuesday, The Joseph Foote Trust (who raise funds for the cbtrc) have a two week radio campaign running soon to raise funds. Sam was asked to take part and record some of his experiences and hopefully encourage people to take a 1k challenge. This is to raise one thousand pounds for the Joseph Foote Trust who fund research programmes.

The aim is to raise £500,000 to fund research to crack the brain tumour DNA code and so eventually understand where brain tumours come from and how they become resistant to treatment. Enabling new treatments to be developed and so raising the survival rate.

The first step to sequence the Brain Tumour Genome will lead the way to all this by creating a wealth of information to lead the research plan forward.

So, as Sam has said 1K - OK - Go For It!!!

The Campaign will run at Kerrang! radio from Monday 27th June you can listen and watch online, so have a look and a listen and see if 1K is Ok for you!!

mimm

Headsmart day

Headsmart was launched on wednesday, we went down to London to the Royal College of Paediatrics and Child Health and felt very honoured to be invited.
The campaign for brain tumour awareness is run by a partnership between The Childrens' Brain Tumour Research Centre, the Royal College of Paediatrics and Child Health and Samantha Dickson Brain Tumour Trust.

The campaign is designed to help doctors and parents get access to the information needed to help identify brain tumours in children and young people. Quicker diagnosis can lead to better outcomes and a lessen disabilities.

All the information , leaflets , symptoms cards and a website are available for GPs and other healthcare settings. The campaign is being piloted in the East Midlands and distribution of all the resources is already underway.

There were a number of speakers at the event and jimmyteens.tv were there filming, I expect the footage will be on their web page soon.

Patrons of the SDBTT,  Earl Spencer and Hayley Mills, were also there giving their support.

You can go onto the website http://www.headsmart.org.uk/ and have a look at the  best practice guidelines, diagnostic aids, leaflets etc. I believe you can also order material online too.

We are all doing our bit to spread the word...you can help too and pass this information on- it may help someone you know, there are ten children and young people a week diagnosed with a brain tumour. It would be fantastic to help get that diagnosis speeded up and make a huge to difference to life and their future.

Sam with Hayley Mills

www.headsmart.org.uk

off to london tomorrow!

off to London tomorrow then....launch of HeadSmart I don't know if it will make the national news but it might be worth having a look and see! Also see how many of the faces you can recognise from the other clips shown on here.

We hit the first milestone last week too, have raised in excess of the first thousand pounds....not bad in the first 3 months and we have only had small events happening, well done everyone and thank you.

mimm

just an update on things....

Time is flying past! Wednesday Peter or should I say Pierre! and Debs came to see us for some filming, we had a great time and hopefully this will be a compelling film to watch when finished...don't worry will post it on the blog when it's time to view on Jimmy teens. We shall be meeting up again in London on Tuesday ....HeadSmart day.

Final figure for the amount raised at Shirt Sleeves last month is £345, thanks again to everyone who came along.

Next event will be in July with a wine tasting and Quiz at Ann et Vin, hoping for a good number of people there too.

We have more new people found the blog, in Columbia and Malaysia...keep on following!

Sam has a place sailing with the Ellen MacArthur Cancer Trust, he will be setting off at the end of August. Last years trip gave him so much confidence and was the first time he had been away from us since he was diagnosed....a great step forward and came back saying he had never laughed so much. It's a great challenge for all the young people who go, and as they all have or have had cancer they belong to a special group, their understanding of each other is immense and their sense of fun and adventure outweighs the difficulties they each face. So let's hope they all have as much fun this year, and a big thank you to Ellen.

mimm

Looks like a busy June

Looks like we shall be busy next month, lots of things in the diary already.

On wednesday Jimmyteens tv are coming to see us for the day and will do some filming at home with Sam and a couple of his friends, that should be fun...it's always good to see Peter and Debs.

June 8th we are off to London to the Royal College of Paediatricians for the launch of HeadSmart the campaign for awareness of brain tumours.

Yes, I did write to Number 10 to see if they would like to meet with us....Peter and Debs are going to the event too....great bit of film I thought. However the Prime Minister is still busy, had a letter from Julie this time although I suspect that it too was computer generated. Had the same line written twice one after the other-  LOL! - if not done by the computer she certainly didn't read before "signing"!!

Then on the 14th it's off to Birmingham to join forces with the Joseph Foote team and we will be taking part in radio interviews with Kerrang radio. This will then be part of a huge fund raising event to raise monies for the cbtrc.

Busy , busy eh?!

Thanks for supporting us and reading the blog....if you want to help out wherever you are go ahead you know where the money is needed!! But if not, no worries, just keep on following us...keeps me happy!! :-)

How Disappointing Number 10!!

Well just how disappointing.....there I was thinking, wow we've reached the Prime Minister! The letter dropped onto the mat, 10 Downing Street on the back of the envelope, a very nice response from the Prime Minister I thought. Caring letter, bit of information and signed by Mrs E Adams.

Now of course it has come to light this past week  Mrs E Adams is computer generated and we too like Sir Gerald Kaufman feel a bit miffed by all this! Not simply because the nature of our "correspondence" was of a personal and emotive subject but also it's not particularly honest is it??!

AND because I'm a polite sort of a person I even gave the courtesy of replying, how foolish do I feel now! Wonder if the computer will say yes to my latest request? I'll let you know.....

However, I have also had a reply From Paul Burstow MP - so the first communication I sent reached someones desk! - and he has taken the time to hand write my name and sign his letter. Well done and thank you.

I know it must be a bit wearing keep replying to people who are always requesting that more is done or more money spent...when money is very short  and resources low, but we need to do it. Our cause is very close to our hearts and we see at first hand where the shortfalls are, so, that's why we keep on writing and lobbying. And that's why a proper letter makes us feel so much better and think maybe we are being heard and listened to. 

Well I feel a bit calmer for airing all that with you and remember if you write check the signatory on the response!!

mimm

Shirt Sleeves ~ what a great evening

Thank you very much Sarah at Shirt Sleeves you provided us with a lovely evening of wine fashion and shopping....maybe I should have put those in a different order!?

And thank you all who came along to support the event in aid of The Children's Brain Tumour Research Centre.

All those ladies trying on so many outfits ...and those who moved completely out of their comfort zone and looked fabulous I'll have to think of somewhere for us to go to wear it all!! Thank you all for coming along and making it such a fun evening, I did stand and just listen at one point it was amazing so much laughter and chatter you are all lovely.

Thanks to Mandy our model -  just how unfair - you look wonderful in everything and all the rest of the team who found items to try, gave advice and refilled the glasses, the canapes were beautiful too!

Sandra who won the voucher so kindly donated by Shirt Sleeves and was able to spend it then and there, Brenda and Pam who won the bubbly and chocolates and an extra big thank you to Gill who sold all those raffle tickets and Judith who folded them ...great stuff.
So looking forward to the next event, if you want to see what fashion goodies you missed last night look on http://www.shirtsleeves.net/

mimm

well done Grove School

Well done to the Grove School they had a "bucket" collection at school to raise funds for the CBTRC, the cheque arrived this morning a fantastic £325.00.

Thanks to everyone who donated ....your money will provide almost a thousand pounds worth of research aren't you all just brilliant!!!

With all the other monies coming in we are doing well, the total is running on the just giving site.....

Fashion evening at Shirt Sleeves this coming week just a few tickets to go!!

fundraising with Ann

We had a succesfull evening at Ann et Vin and raised £145 for the Children's Brain Tumour Research Centre.
Ann came up the idea of an accessories swap and it worked really well, we all took along items no longer worn and swapped hem for a small amount of cash!! Excellent idea  ~ and had the bonus of wine and catching up with people....
We also had a raffle for a giant pink bunny....thinking back I suppose it should have been a pink elephant given the venue...okay bad joke!!

Here's Ann and the said rabbit

And well done to the very nice lady who was the lucky winner and who drove off with the bunny in the passenger seat of her car!

And thanks to all who have donated the rest of their items for me to sell and raise more money....really appreciated.

Next evening out 19th May at Shirt Sleeves....Drinks, Canapes, Fashion Show and Shopping

mimm

night out!!

just getting ready....fund raiser tonight at Ann et Vin.
An accesories swap evening, swap unwanted items for a small fee and update your look!!
Very green and very unextravagant!
Proceeds will go to the Children's Brain Tumour Research Centre
Should be an interesting evening.....
better go and get the lippy on....and that's just Sam and Mike!!! x

Well???

Well, did you watch....www.jimmyteens.tv tonight @ 6pm??

No! Well you can go online now and see the Brain Tumour Debate hosted by Peter we thought it went well. watch and let us know what you think!

Thanks to all those in Brighton who not only watched but commented while we were still on air, thanks for your messages and support....we love you too!!!!!

Welcome to those who have blogged in in Singapore , keep following..

mimm

Don't forget to watch

Tomorrow night at 6pm BST on jimmy teens.tv there is a live debate on Brain Tumours presented by Peter.......and we shall be there, hope you'll have chance to log in and watch and maybe even comment live!! If not catch up later and see what was aired. Look forward to seeing you:)

Hello to those new followers from Germany and Russia and hope you continue to log in!

I think I posted that had contacted no 10 prior to our trip to the House of Commons, but had no response, well a letter arrived this morning! Apologising for the fact that Mr Cameron's diary did not allow time to meet and that he would be having a word with the Health Minister about our concerns regarding funding for research into Brain Tumours. Hurray let's hope that happens and has some impact.

More soon......better go and check the wardrobe for tomorrow!!!

bbc news

My, we're up and running today!

On an earlier page I said how we'd had the bbc reporter Rob Sissons at the house to do some filming and he also came to the launch of the web site at QMC. Well - here are a couple of the reports he did, these were shown on tv on that day...thank you bbc

...oh and please remember we didn't have the benefit of the make-up department!!!! 

feel free to comment :)

mimm

live debate

How fantastic we now have people reading the blog in South Korea and Denmark!

Next tuesday 19th, we are taking part in a live debate on http://www.jimmyteens.tv/ those reading earlier blogs will have come across Peter and his work. It will be on air at 6pm thats BST and you can log on , join in and comment live!

That's all for now

mimm

just jogging along...

Well after all the hustle and bustle of events in march this month has been quiet so far!! The launch of the website has been well covered and I hope will have great effect.
We popped up to Sheffield to say goodbye to Rachel, the wonderful teacher from ward m3, her enthusiasm,wacky sense of humour and understanding of every child she met was inspiring. She was the one who gave Sam the drive to get out of his bed each day and go to "school" even tho he couldn't actually see to read or remember how.....thank you Rachel we all love you  -  such a shame the cuts have resulted in your leaving the hospital school system,to lose such expertise is sad but I'm firmly convinced you'll be around somewhere and we shall see you again soon. x
We shall be back in Sheffield in a couple of weeks Sam's taking part in a debate on education at jimmyteens.tv and looking forward to seeing Peter and Debs...hi Debs!
There's a fundraising evening Easter tuesday evening at Ann et Vin  - accessories swap now that should be interesting, shopping and wine!!  - funds going to cbtrc   .....And I don't think you can swap a handbag for a bottle of Moet - might be worth a go ...give Ann a call to book your place!
Must get the monies together from the sale of the hat badges too see how much we raised here for hat day.
The Grove raised extra for the cbtrc too with a "bucket collection" thanks everyone, not only generous you looked wonderful on the day too!
There's lots more on the horizon so keep following - hey we reached Taiwan last week!! how good is that - 8 countries so far.

mimm

Prof David Walker's speech 29 mar 2011

After we had been to the House of Commons and lobbied with great enthusiasm.... and I hope success....we were invited to a reception at Church House.
Various people had been invited to speak  and Mike managed to film a couple of the speeches. Here is Prof David Walker, I know the film is around 6 mins long but I urge you to view and listen, the content is relevant to us all whether patient, carer or supporter of the campaign.
Have a look ~ see what you think and consider what you might be able to contribute in any shape or form to make that difference happen as quickly as possible.

So, what do you think...

hope this gets a good number of views it's taken me two days to load!!!





http://www.cbtrc.org/

www.justgiving.com/pam-white0

the lobby

Wow, what a great day tuesday was....we even had sunshine! Thanks so much to The Joseph Foote Foundation who kindly offered us seats on their coach and we never expected to be fed and watered too  -  fantastic...thanks Andy and everyone  ~  won't quote any more names in case I miss one out!

Thanks to  :- all the MPs who gave us their time and support I'll pop photos on of those from our county. 

All the other organisations who were there - I think over 200 people in all

The policemen at the House of Commons...you were lovely!

The reception afterwards and those who gave speeches, especially Neil who was magnificent

And all those who shared their stories............

We just need to spur more politicians on to listen and act on what they hear and I'm sure we shall do just that!!

Team photo....

Patrick Mercer MP - Newark

Lillian Greenwood MP - Nottingham South

Vernon Coaker MP - Gedling

And last but not least a thank you to Peter and Debs from Jimmyteens.tv who not only met with their MP but also interviewed a number of people on the day, check their web page sometime soon. Peter has also been on Sheffield radio this morning!!

mimm

London here we come!

Well we're off to London to the House of Commons tomorrow and will hopefully be very persuasive when talking with our MPs. If this gets as much support as the launch of the Manifesto last October things should go well.
It's also fantastic that Sam feels he would like to go too....after all he knows better than most what support is needed!!

Oh and never did get a reply from number 10 or the deputy....

Look out for us giving you a wave from Westminster 

mimm
                                                                          

all over the world

Morning and welcome to British Summer Time!! Altho' it is a bit grey here...
The blog gives me stats as to where people are who view the pages and I'm amazed to say, we have only been blogging for a few weeks and already we have reached people all over the world  -  in the last few days we have people from...
UK, Hungary, Belgium, USA, Australia, China, Sri Lanka
what a fantastic range of countries and followers ~ keep on following!!

It's off to Westminster on tuesday, there's a lobby organised by the main organisations for brain tumour research and support and we shall be there. We have kindly been offered a place on the coach provided by The Joseph Foote Foundation, thank you. The aim is to lobby MPs to support the manifesto, we have managed to get an appointment to meet with Patrick Mercer MP so lets hope we get him on side! I think I said I'd contacted Number10, heard nothing as yet....I also contacted Nick Clegg but nothing there as yet either. They've both been in our area in the last 2/3 days too...I would have had time for a quick chat, ah well!!

mimm

thanks to all who took part in hat day!!

thanks to all those people who bought badges for hat day yesterday, to all those who helped sell them and those who thought I'll just wear one of my own anyway!! The Grove school were amazing and there were some quite ingenious hats on show.......

not only hats but pizza too in the pe department!!!!

mimm

email from CBTRC

This email came first thing this morning from Emma who is one of the people in the Development office for the Childrens Brain Tumour Research Centre. I thought it would be good to share with all of you

mimm

Dear Friend,

The Children’s Brain Tumour Research Centre (CBTRC) is going from strength to strength thanks to the valuable support of our donors.  Your gifts and external grants have tripled the Centre’s research capability.  Three research fellowships are now in place and a fourth is planned as soon as enough money is raised.   The Centre has bought vital pieces of equipment to further its research and improve treatments and is now on the verge of becoming a Centre of Excellence in the UK. 

The objective is simple:  To improve our understanding of cause and nature, treatment and outcomes of childhood brain tumours through active research. 

The rationale: Brain Tumours are the leading cause of cancer related death in children

The impact: We wish to raise public and professional awareness.  Create a strong field of clinical scientists committed to further developing expertise in a range of scientific research themes to improve outcomes for children and young people with brain tumours and related disorders.

The benefits of supporting our work are tangible.  We are creating an enhanced public, scientific and professional awareness of problems and providing support for research into solutions to build confidence in health systems.   We are making innovative and exciting scientific discoveries about how to treat the developing brain, so that more children and young people are cured and fewer are disabled.

Our philanthropic target is to raise £1 million per annum.

Will you help to improve the lives of young brain tumour sufferers and their families worldwide?

We’re very grateful to the University of Nottingham’s web team for all their hard work in setting up our new website.  This can be found at http://www.cbtrc.org/  Please log on to find out about our latest research, plans and events.

Thank you for your continued and valued support.

Kind regards

Emma

www.justgiving.com/pam-white0

here's support from MEP Glenis Willmott

Glenis was present at the QMC Nottingham for the launch of the website....see earlier blog. Here's a clip of what she had to say in support
 ~ but at the end the bit about boxing should read boccia!! just so you don't worry too much about Sam's exploits!

lobby

Well Hat Day tomorrow...hope you all have your badges to wear or if not a hat to mark Brain Tumour Day  o(:-)

We are off to Westminster on tuesday 29th to lobby the MPs to support the funding of research and we shall also hand out copies of the manifesto. Vernon Coaker MP was at the launch of the website and was extremely supportive I'll pop a clip of his speech at the end of this. I've contacted Patrick Mercer so will hopefully get his support too.....I also got in touch with number 10 ~ well why not indeed, you've got to aim for the top!! Let's see if there's a reply!

I saw James Cracknell on tv this morning describing the difficulties he's faced following his brain injury and his arduous recovery and thought this is what our children family and friends often face as a result of a brain tumour as well as cancer. Wouldn't it be fantastic if as a result of research that damage could be minimised and treatments be less invasive as well as discovering the cause of the tumour??

So might have to up the amount I would like to raise to something a little more significant what do you reckon?!

Any way.....here's Vernon!!!

Bye for now  ~  mimm

just....thanks

It's two years today since Sam collapsed and although this isn't actually about fund raising that is exactly why we are doing what we are doing. And I just wanted to say a world wide thank you .....to Dr Joe who knew exactly what was happening to Sam right from the moment he entered A&E and put everything in place to give him the best chance possible. The crew who took us to QMC the fantastic surgeons doctors nurses physiotherapists play leaders radiologists and teacher Rachael. Absolutely everyone on ward E39 what a crazy bunch and dr Dot for her powers!! The wonderful people in Sheffield who made us part of their family and gave us a bed when we really needed it. All those "ordinary" people who we didn't know we had as friends and those we will never know who prayed for Sam and still do.
The food parcels -we were so well fed and never left the ward!! Well that's my excuse for those extra pounds....the books, and all that ironing that was always done so well our "press officers" who made it so easy for us to keep focused and hold the dark thoughts at bay. All those dvds to give us a break from spongebob. The red onion chutney ahhh that was so good, and what about the can of Boddingtons sneaked on to the ward which we drank on a saturday night but it seemed so wrong!!
And when we came home you never went away...thank you, we still need you..maybe not so much or so often but it is a very safe feeling knowing you are there. We have had an amazing journey so far, been to some dark places and fantastic ones, made some wonderful new friends and loved our old ones. What stories we recall when together and what a bond we now have with people we never even thought we would meet. We love you all!!!

mimm xxx

NUT day

November 2010 Sam went to London to take part in some workshops with the NUT about the issues facing young people returning to education following treatment for cancer and especially brain tumours. This was all part of the ongoing project to raise awareness of the difficulties brain tumour patients face as part of their recovery and rehabillitation. He had a fantastic reception and completely engaged the teachers, you can see by their reaction to him that they took a lot on board that day and openly admitted their lack of understanding of lots of everyday (well for someone with a brain tumour!!) hurdles. Many said they would change the way they respond to young people with cancer and hopefully make the return to the classroom a less stressful experience....the right response thank you teachers!

Jimmyteens.tv came to London to film the event, thanks Peter and Debs. Here is a film of the film that Jimmyteens.tv put together, of the day with the NUT - this film was shown last friday as part of the presentation given at the launch of the new website....it is introduced by Prof Walker who is Sam's oncologist.....the head in the corner of the footage belongs to Prof Grundy!!
This clip was filmed by Mike

Great start

What a great start for the week we have had two generous donations come in this morning via the just giving site  - one from Pete at The Orchards Golf Club thanks Pete! And another all the way from Australia, many thanks to Jayne Andy and Ben .....spread the word!!!
Sam is still getting texts and emails following his appearance on tv friday, and Mike and I were in town this morning when a lady got out of her car and came up to us to ask we were the parents of the boy who was on the news friday??! She went on to say how wonderful she thought he was...how amazing!
Laura and Steve called in for some badges and I think Steve is to set up a fundraising event and hopefully sponsors for the trust how fantastic.See you at Silverstone soon Steve.
Waiting on more badges arriving....only 2 weeks till wear a hat for brain tumour day, the Grove school are holding an event well done the Grove and I believe we have recruited a few more places to take part excellent...look forward to seeing what the office of Glenis Willmott comes up with do your best Josh and let us know!

phew...

what a day....lots of telly coverage for the cbtrc and sam of course. Had to leave home just after 6.30 to be at the radio station for another interview along with Prof Walker.
Yes we did have a hospital breakfast before filming again...dahling!!
Lovely to meet up with Peter and Debs from Jimmyteens.tv - you should look on their web pages especially under headspace(brain tumours!)
Then Sam met Glenis Willmott MEP and Vernon Coaker MP ( really nice people)and took them on a tour of the ward after that there was a presentation and Sam launched the new website. Well done Sam x
Have had loads of texts and messages from folks who've spotted him on telly and the evening news hasn't gone out yet!!
Let's hope this is the start of raising awareness...and money...

mimm

sam's the star!!

Oh my what a busy day, they all want to interview Sam ahead of tomorrow!!
He has a small write up in the local paper "schoolboy to speak on local health" Jimmy Teens TV have been on the phone for a quote to go with the footage of his talks at NUT headquarters. BBC local news popped in at home for an interview. And you know that moment when you just wished you'd dusted...........ah well! Local radio have called too and he's going in to the studios tomorrow very early for an interview.
Oh Sam you are just a star!!
So it's looking like full english at hospital tomorrow morning just to keep us going...
Lets hope some of these folks move on to the Just Giving site...
More later
Mimm

Sophies' doing her bit!!

Soph's encouraging all her mates to join in for hat day...well done Soph I'll be sending you your own poster and hat badge so you can do it in style!!!  Which one will you choose.... sombrero, witches in purple of course, top hat or very nice laydees hat?? Now don't get carried away it's only a badge, but very nice one at that.
We'll be taking some with us to the launch on friday too, see if we can sell a few more. I do believe the telly will be there - so we could be famous for a few moments, but then Sam already is that man !!
Thank goodness I'm having my hair done tomorrow, no no it was already in the diary before all this!

mimm

This is what Sam's doing on friday ....

Here is a copy of the press release for friday....Go get 'em Sam!!

PA../11

March 7 2011

Local politicians to visit Nottingham-based children's brain tumour centre of excellence

Politicians from the East Midlands are to hear how under-funding and EU red tape are threatening vital new developments in diagnosing and treating rare brain tumours in children.

Experts at The University of Nottingham's Children's Brain Tumour Research Centre (CBTRC) will discuss the challenges facing researchers studying the disease with Gedling MP Vernon Coaker and East Midlands MEP Glenis Willmott during a visit to the centre on Friday (March 11).

They will be given the chance to see first-hand the laboratories where important scientific breakthroughs are made and speak to a teenager whose rate of recovery has been drastically improved by having access to experimental drugs through clinical trials at the CBTRC.

Co-director of the CBTRC David Walker, Professor of Paediatric Oncology, said: “March is Brain Cancer Awareness Month, so this is the perfect time to be speaking to our local politicians and asking for their support in the campaign to address the inequalities which exist in Europe in treating and researching this life-threatening disease.

“Every year around 450 children are diagnosed with a brain tumour and it has overtaken leukaemia as the cancer which kills the highest number of young people. Brain tumours account for six per cent of all cancers yet receive less than one per cent of the national cancer research spending in the UK and we at the CBTRC are committed to redressing that balance.”

The academics and clinicians at the centre will be asking MP Vernon Coaker to support the All Party Parliamentary Group, which was re-established following the change of Government and hosted the launch of a national manifesto on brain tumours in autumn last year. Devised by the UK's four leading brain tumour charities — Brain Tumour Research, Brain Tumour UK, International Brain Tumour Alliance and the Samantha Dickson Brain Tumour Trust — with whom CBTRC collaborates closely, the manifesto calls for the Government to work in partnership with them to ensure early diagnosis and treatment for everyone affected by a brain tumour, implement best practice guidance for caring for people with brain tumours and significantly increase Government investment in research into the disease.

Vernon Coaker MP said: “Hearing that your child has cancer is every parent's worst nightmare. Nottingham should be extremely proud that it is home to such a centre of excellence that is helping families through what is undoubtedly one of the most distressing experiences they will ever face. I am looking forward to hearing more about the work that the scientists and clinicians do to translate cutting-edge research into new approaches to investigating, managing and treating this disease.”

More follows…

— 2 —

Compared to the US and other parts of the world, research into children's cancers and brain tumours remains severely under resourced in Europe. The recent EU Clinical Trials Directive has created significant barriers to the initiation and conduct of clinical trials in children and has failed to deliver on speeding up the licensing of new drugs suitable for children's diseases.

MEP Glenis Willmott attended an event at the European Parliament in Brussels in February, organised in collaboration with the European Society for Paediatric Oncology (SIOPE) at which the issues were discussed.

She said: “Funding for research into children's brain tumours is of vital importance and without it we simply wouldn't have excellent facilities like the CBTRC producing life-saving new therapies and advances in patient care.

“I was delighted to be invited to visit this world-leading research facility and I hope this event can do much to raise the profile of this crucial issue.”

As well as seeing the specialist paediatric oncology wards at Nottingham University Hospital's Queen's Medical Centre, where the CBTRC is located, the politicians will also be given the tour of the centre's research laboratories.

Headed up by Richard Grundy, Professor of Paediatric Neuro Oncology and Cancer Biology, the laboratories have produced some significant advances in diagnosing and treating brain tumours. Among these has been work to better understand the basic genetics of rare types of brain tumours, why they may respond differently to treatment and offer varying prognoses for patients — work which was published in Nature and the Journal of Clinical Oncology.

Current work includes looking at the innovative use of delivering chemotherapy drugs directly into the spinal fluid surrounding the brain by continuous infusion, drastically reducing the dose of the drug that needs to be given (in some cases from around 450 ml to just 1ml), hence cutting down on the associated side effects.

On hand at the event to talk about the patient experience will be 14-year-old Sam White , who was given just an hour to live by the doctors who diagnosed his rare brain tumour. Now, 18 months on and following treatment at the CBTRC, Sam has defied both the experts and the odds. Although the brain tumour has left him with some lasting effects, such as memory loss, Sam is back to school and his studies in his own year-group with the help of a little extra educational support. Facing everyday challenges with a mix of pragmatism and positive-thinking Sam recently spoke of his experiences of returning to education following his illness and rehabilitation at the annual meeting of the National Union of Teachers.

Mum Pam White praised the staff at the CBTRC and Nottingham University Hospitals for the care that her son has received.

“If it wasn't for the fact that we lived so close to these excellent facilities in Nottingham, Sam would not have stood a chance. Everyone has been fantastic — from the surgeons who operated on him that first night right down to the clinical psychologist who helped him overcome his fear of MRI scans.

“Of course, what has really made a terrific impact is having access to the latest drugs and treatments through clinical trials at the CBTRC — and for Sam, being treated with warmth and understanding, not just as 'a patient'.”

Sam will launch the CBTRC's new website at the event — www.nottingham.ac.uk/cbtrc —which is designed to offer information and support to families affected by brain tumours, encourage fundraising for the centre and act as a gateway for collaboration with other brain tumour research centres around the globe.