Happy New Year to everyone & we hope that 2013 will be a healthy and successful year for all of us...Last

year was a busy one for us & we feel we are now ready, after a short break at Christmas to take on the

challenges of a new year.

In terms of “positives” to start another year, we’re pleased to announce that

we have now raised in excess of half a million pounds which has fully

funded 3 research positions & key equipment for our researchers. We are

beginning to see greater steps towards our goal now which is hugely

encouraging. The challenge is of course to keep going to make our money

work as hard as possible for children who most need these new

treatments. We recently met with our latest researcher in the brand new

molecular pathology building in Sutton and you’ll find more information on the

scientific progress later in the newsletter.

We had the privilege of being invited to the Radio Surrey & Radio Sussex

Community Heroes Awards ceremony at Wakehurst Place in Sussex in December

as speakers & charity benefactors from a fundraising raffle during the evening. Sam

Exworth, friend & supporter of the charity had also been nominated for an award &

was shortlisted in the category “Young person of courage or achievement”.

The recent headline news about the case regarding the 7-year old boy Neon Roberts who has

medulloblastoma has brought childhood cancer to the fore of people’s minds—something which needed to

happen as sadly far too many families are finding themselves in the

same position as the Roberts family with enormously challenging &

stressful decisions to make. The case highlighted some of the issues

surrounding childhood cancers and was the tip of an enormous iceberg.

If there were safe & effective treatments available for children with

cancer none of the discussions, debates or tough decisions would be

necessary. This is of course, is what we are striving to change. We were

involved in a whirlwind of publicity as the hearing regarding radiotherapy

for Neon Roberts was awaited & finally announced. We took the

opportunity to speak on national radio and appear on a number of TV

news programmes (ITN, Sky and BBC). We now urgently need to try to

engage the media in looking deeper into the underlying issues to help us to raise the necessary awareness

and to help bring about the changes needed.

Please do consider doing something to support us this year—however big or small it may be, be reassured

that you will be making a difference. We can’t do this on our own—we need your help.

As always we welcome your thoughts, questions or feedback & we hope to see you at one of

our 2013 events.

Please keep in touch, Karen & Kevin

Newsletter No. 11 January 2013

Welcome and update from Karen & Kevin

Join us at one

of our events

this year—we’d

love to see you!

PHOTOS: Above right: At Radio Awards evening & above left: At BBC Television Centre

www.christopherssmile.org.uk

Diary Dates

For details of any events or if you’d like to help in some way, contact us at

info@christopherssmile.org.uk We’d love to hear from you.

Collection at Waitrose Sunningdale

9-5.30pm on Saturday 22nd June

Any help appreciated!

We are now taking bookings for our

Wine Evening. Places are allocated on a

first come first served basis, so please book

early to avoid disappointment! More details

are on the home page of the website.

Golf Day at Windlesham Golf Club Sunday 12th May Details to follow

Puss in Boots performances by The HATS on

Friday 25th Jan @19.30pm, Sat 26th Jan @

14.30 & 19.30. Also on Friday 1st Feb @ 19.30 &

Sat 2nd Feb @ 14.30 & 19.30. Email

panto@thehats.org.uk for tickets

or call 01276 66798. Adults £8 Children £5.

Autumn Ball at

Wentworth Golf Club

Saturday 19th October.

Details coming soon.

If you are considering taking on a challenge

this year, whether running, climbing, walking

or anything else or if you have other fund-

raising ideas, we’d love to hear from you &

would be pleased to help you register or set

up whatever you need.

“Kardy-O-Fun

Party” Lightwater Leisure Centre

6th

April 1pm—4pm.

Fun filled healthy exercise

activity party.

Email

caroland-

sarah@rosemaryconley.com

for details

£15 per person.

Our Bake & Donate Week will be

launched on Monday 25th Feb &

will continue throughout the week. We

hope you’ll be inspired to take part.

Check the homepage of the website for

all the details.

Dr Louis Chesler ,Team Leader from The Paediatric Drug Development Team at The ICR

writes about the work our researcher Dr Evon Poon has been carrying out over the past

year and a half:

Dr Evon Poon was funded by Christopher’s Smile to develop and test combinations of different

molecular-targeted therapeutics (drugs that only attack specific cancer cells without damaging oth-

er normal cells) for treating paediatric solid tumours.

For the first stage of her three-year research programme, Evon has been evaluating the effective-

ness of new molecularly targeted therapeutic drugs which attack the MYCN gene in cancers such

as neuroblastoma and medulloblastoma. She has identified a first set of active drugs and is now

focusing on testing clinical candidates and combinations of drugs that potentiate each other. Sev-

eral promising drugs that have the desired anti-tumour activity have been selected and taken for-

ward for preclinical studies. These new drugs target the MYCN pathway which is often abnormal in

medulloblastoma and neuroblastoma, and is predictive of aggressive disease and poor clinical sur-

vival. Preliminary studies demonstrated that the combination of these new drugs with existing

treatments offer a survival advantage. On-going work is being pursued to test this further.

Evon is also working together with experts from the MRI imaging group to generate a model of re-

sistant neuroblastoma that mimics the recurrence of aggressive disease in the clinic. It is very im-

portant to develop therapeutics that are effective for patients with resistant cancer recurrence.

About 50 to 60% of patients with high-risk neuroblastoma have a relapse and these tumours are

almost always resistant to current treatments. The goal of this project is to improve the survival of

paediatric cancer patients by finding treatment that would be efficient against relapsed tumours.

Evon has made very good progress on her studies as described above. Since November she has

completed studies of the mechanism by which particular inhibitors attack the MYCN protein. This

work has been submitted to a very respected scientific journal. The work has also identified that a

combination of two specific MYCN-targeted agents should be maximally effective against MYCN

protein and we are preparing to test this combination in the next 6 months. Dr Poon has also made

good progress defining her chemoresistant model of neuroblastoma and we anticipate that this will

be sent to publication in the next 6 months.

Scientific Update (1)

info@christopherssmile.org.uk

PHOTO: Left to right:

Dr David Gonzalez de Castro, Head of

Molecular Diagnostics , Elisa Izquierdo, Dr

Evon Poon in the newly opened Centre for

Molecular Pathology building at The Institute

of Cancer Research in Sutton

Elisa Izquierdo, our latest funded researcher who took up her post earlier in January is

working with Dr David Gonzalez de Castro, Head of Molecular Diagnostics at The Institute

of Cancer Research who writes about their latest projects:

Each individual cancer has a set of molecular alterations that

can be defined as the genetic fingerprint of that particular

tumour. A new approach to treating cancer, often referred to

as personalised medicine, has been developed where therapy

is tailored to target these molecular alterations.

Cancer is caused and driven by the accumulation of genetic

changes or mutations in the DNA of otherwise normal cells.

These mutations can vary in tumours from different patients.

Therefore it is vital we inform the selection of young patients

in early clinical trials guided by the tumour biology. This will

benefit the patients with high risk tumours by increasing the

likelihood of response and also will make the development of

anti-cancer agents faster and more efficient.

With the support of Christopher’s Smile, we therefore aim to

incorporate predictive biomarkers (tools to select patients) in

all early clinical trials for children. In many cases, the known

molecular aberrations will serve to select which patients go onto a particular therapy. In the other

clinical trials where there is not a clear predictive biomarker, tissue will be collected from different

sources (tumour, blood, bone marrow) in order to discover and develop new biomarkers that will

help children in future trials.

We plan to increase the number of clinical trials that select patients with known molecular

aberrations and the newly appointed researcher, Elisa who has expertise in molecular pathology,

will be the first fully dedicated to paediatric cancers. In neuroblastoma, one of the most deadly

childhood cancers, all patients treated and referred to the Royal Marsden Hospital will be screened

for mutations/aberrations of ALK, p53 and PI3K pathways at frontline and at relapse. We are

identifying these groups of patients so we can enter them into trials with new investigational

therapies in order to achieve the best possible outcome.

Scientific Update (2)

www.christopherssmile.org.uk

PHOTOS: Above:

Elisa Izquierdo (newly appointed paediatric molecular

pathologist), Karen & Kevin Capel & Dr Evon Poon in

front of the newly opened Centre for Molecular Pathology,

ICR, Sutton

Right:

Dr David Gonzalez de Castro, Karen Capel, Elisa

Izquierdo, Dr Evon Poon & Kevin Capel

Spotlight on Jack and Sam

Sam Writes: “Once again it has been very up and down for me over the past few months….

In September I saw a specialist about my hip problems and discovered that there isn’t any treatment that can help and I

need a full hip replacement.

Unfortunately my kidney problems haven’t improved at all and have actually become worse. I had a kidney biopsy in

August which shed some light on what might be causing the problem but unfortunately hasn’t led to any treatment or

improvement yet. I am constantly anaemic because of my kidney problems. However I

have just started on a weekly injection which hopefully will improve my haemoglobin level.

It is very difficult for doctors to know what to do about my kidneys as I have had so much

chemotherapy, radiotherapy and immune suppression which all cause problems and some-

times there isn’t a lot that can be done once the damage has been done, other than

controlling my blood pressure which I do with medication.

At the moment I am not strong enough to have my hip replaced but hopefully by early

summer when I finish college I will be well enough to have a new hip. I started back at col-

lege in September part-time and it has been going very well. I am studying politics which is

a new subject for me and I am also doing history which I was unable to complete before I

became ill. I am really enjoying being back at college and I especially like politics. I hope to

sit my AS exams in the summer which will mean I can continue next year with Law as well

and work towards my A levels.”

info@christopherssmile.org.uk

We have an update for you on our friends and supporters Jack Daly (11 years old) & Sam Exworth (19 years

old). Both of these young people continue to battle in their everyday lives after being treated for a

medulloblastoma brain tumour and for Non-Hodgkins Lymphoma.

Jack’s dad writes: Since our last update, a lot has happened including his life changing trip to Disneyland Florida.

Although Jack is in most people’s eyes is doing really well and enjoying life like most normal children, we as parents are

suffering the after effects of the radiotherapy he had to undergo.

Before Jack’s diagnosis he was a happy, confident child and nothing fazed him what so ever. Now he finds it hard to

make and keep friends, and it is so frustrating to watch the tears he sheds on a daily basis . Jack is on a cocktail of

medication which includes 10mg of hydrocortisone 3 times a day,25mg levothyroxine once a day and an injection every

night of saizen which is a growth hormone. This cocktail of drugs will be strengthened as he gets older and he may have

to stay on these for the rest of his life. He needs to take these drugs because of the damage the radiotherapy caused to

his pituitary gland and his spine. We have noticed over the past 6 months that Jack’s short term memory has become

really bad which makes everyday living really hard work as we have to tell/remind him at least 3-5 times about silly

everyday tasks. Due to the drugs he is taking, Jack has swollen up like a balloon which has been causing us major

problems dressing him due to his unusual shape. When the surgeon took out Jack’s brain tumour he told us that

although he had removed the tumour,” Your war against this has only just begun”. We now understand exactly what he

was talking about.

On a positive note, Jack spent 10 days out in Disneyland Florida courtesy of Dreamflight UK. He had an amazing time

and the pictures show this along with his reminiscing stories he tells us.

On his birthday in October he received a birthday card from Matt Smith (Dr Who) and his mum Lynne along with tickets

to the Dr Who experience in Cardiff. When we arrived, Lynne phoned us and said that Matt had invited us once we’d

finished our tour round the exhibition to pop across to the studios to meet him on set for a chat and a “cuppa”. Jack

couldn’t believe his luck. We not only met Matt and the rest of the cast but we had a backstage tour of all the different

sets for Dr Who including seeing the new tardis.

Although we try our hardest to keep Jack’s spirits up and take his mind off the challenges that life throws at him, it’s

great that charities like Dreamflight, Starlight, THHN and so on give these children rewards for their bravery.

PHOTO: RHS: Sam Exworth

PHOTOS: LHS:

Jack in preparation for

radiotherapy treatment; swimming

with dolphins in Disneyland & with

his hero Dr Who

Recent Events & Supporters’ News & Activities

Registered Charity No. 1129906

On Saturday 1st December Santa paid a visit to our Windlesham

Christmas Craft Fayre. From 2-5pm Santa met & offered gifts to

children in his grotto; stalls with a range of crafts & gifts were available

as were lots of delicious festive cakes, fresh pancakes & mulled wine.

Our thanks to Santa and everyone who supported the event as well as

to Sherborne’s for sponsoring the event and Sytner Mini for providing

Santa’s transport.

A “fresh” sunny December morning was perfect

weather for The Jingle Jog at Frimley Lodge

Park on Sunday 16th December. Over 100

joggers were on the start block at 9 o’clock in

various festive guises shaking their bells ready

for their 5km jog. We’re grateful to

Cliff Hilton for all his hard work

planning the event.

Volunteer staff at British Airways headquarters Waterside

hosted a Santa’s Grotto event on Christmas Eve. Santa

met with children who had been well behaved throughout

the year whilst Elves and other helpers created a festive

atmosphere raising over £800.

PHOTOS: Above: Klaudia Gibson’s

glassware stall, homemade

refreshments & our Santa Chris

Ward in his grotto.

PHOTOS: RHS: Jingle Joggers ready to go, 3 Christmas Elves enjoying

the atmosphere & Kevin with our 2 winners, Tony Ord, overall winner

finishing in 18.44 mins and Katie Standen, first female to finish in 23.39

minutes.

PHOTOS: Left: Regular helper & Elf

Cathy James; Above: “The Festive Grotto

Team” with Christopher’s Smile Trustees,

Christopher’s nanny & granddad & BA

volunteers

We were pleased to gather enough

volunteers to help us with some

“festive packing” at both Marks and

Spencer at The Meadows & Frimley

Waitrose in the run up to Christmas

and thanks to both our helpers and the

generosity of customers in the stores,

we raised over £2,800.

Thanks also to both stores for allowing

us to be in store on these occasions.

PHOTO: Above: Some of our

“packing team” at Waitrose:

L to R: Steve Osborne,

Bettina Ricker, Jan from

Waitrose, Karen, Kevin &

Denis Conroy

The Rotary Club of Ascot

hosted a Fish & Chip

Supper & Quiz Night in

November raising £150.

Klaudia Gibson & Caroline Atkins

worked hard to organise a great

autumn Craft & Gift Fayre again.

This event has become one of

the “fayres to visit” in the area

with original stalls & gift ideas. An

amazing £700 was raised through

the event.

Gerry Britz organised a House Sale at

home in Hartley Wintney in December

raising almost £300. Thanks to Gerry &

everyone who supported the event.

Basepoint Camberley

hosted a Christmas Fair

in support of the charity.

Recent Events & Supporters’ News & Activities

info@christopherssmile.org.uk

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We remain grateful to everyone who supports or has supported our charity. Please

stay in touch with us and be part of making a difference for children with cancer.

Ways you can help us….

Lesley Evans with the ladies vocal group “Better than Chocolate”

raised the roof on Saturday 17th November in Farnborough at

their Gala Charity Concert.

Specsavers Camberley have supported us over the past 18 months organising a number of imaginative fundraisers including “optician themed” cake baking, 2012 designer frame donation month, raffles...all culminating in raising almost £2,400. We’re grateful to both the team & customers of the branch.

Our thanks to The Big Give & everyone who pledged & donated enabling us to gain matched

funds of £5,000. Thank you to all who have recently donated including the Briars Nursery,

Lightwater Infants School, Elvetham Heath Primary School, Seeonee Cubs & all individuals

who support the charity. All donations are special to us & are helping to make a difference.

Christopher’s Smile was invited to the

Institute of Highway Engineers Wine &

Wisdom Quiz Night at Ripley on 30th

November both to take part in the

evening & to be the recipient of funds

raised. The “cozkids” team won the

shield as well as receiving £900 raised

during the evening! Thanks to everyone

for the support & for a great evening.

Notcutts Garden Centre

Bagshot festive Wishing

Well raised £474.64

Barrett & Coe Bagshot

Festive photoshoot on 6th December

raised £75 for Christopher’s Smile.

PHOTOS: Better than

Chocolate; Maxine

Clare & Lesley Evans PHOTO: Above: L to R: Directors

Lateef Iqbal & Stuart Olley present

cheque to Karen Capel. (Photo

courtesy of The Camberley News)

SITA in Hayes continue to offer fantastic

support & in “Movember” the Bearded

Chefs raised over £500. The total raised

to date by SITA is in excess of £8,500 .

Thanks again to Daphnie & the team.

PHOTO: Above: The

Bearded Chefs

We are delighted to have

been successful in receiving

a Grant from the Gannett

Foundation to purchase a

FISH analysing microscope.

We are grateful to the

Trustees of the Foundation

for making this award.

Nominate Christopher’s Smile. If your company, school, church or any other organisation is looking at raising

funds please put us forward for consideration. Even if we’re not chosen, you will be helping to raise awareness about

the charity & what we do.

Attend an event. Have a look & see what takes your fancy & join us for something new, different, social – whatever

you like to do.

Volunteer. We need people to help at events & with event planning, bag packing and fayres, with admin - simply

giving time to share ideas & thoughts is a help.

Recycling phones. Rather than throw away your old mobile, let us have it for recycling. We can raise about £4 per

phone for the charity so get in touch if you’re looking to change your phone.

Online shopping. Shop through our website and raise funds whilst making your purchases. Lots of your favourite

high street names are available through the easyfundraising or amazon link on the homepage of the website. It costs

you nothing & you’re raising money for us!

Up for a challenge? If you enjoy running, climbing, bungee jumping – anything at all, please let us know & we’ll help

organise something for you.

PHOTO: The IHE

President presents

shield to Kevin

from “cozkids”

winning team

Please continue your support—it is important to us. We look forward

to seeing you this year. Karen & Kevin.

www.christopherssmile.org.uk

STANDING ORDER INSTRUCTION

(Please complete in block capitals) To: THE MANAGER

.............................……………………………………………….BANK LTD

………………………………………………………………………………… ………………………………………………………………………………. Please pay to the account of:

Christopher’s Smile HSBC Bank plc 29 High Street Camberley GU15 3RE (bank sort code 40-16-05; Payee's account number 81847120)

the sum of £:.........................

on the.......................day of the month and then monthly thereafter until further notice Signed:...............................................……………….... Sort code:…… -………-………Account number: ......................................................… Name:………….........................................................………… Address:……………..............................................…………... ………………………………………………………………… ………………………………………………………………… Postcode:……................................................ Date ………………………………………… *You can claim Gift Aid if you are a UK taxpayer and have paid income or Capital Gains Tax at least equal to the amount we reclaim

You can help Christopher’s Smile by setting up a standing order to give on a regular basis. Any

amount helps, a few pounds a month makes a huge difference and 100% of your donation will go to

childhood cancer research.

Registered Charity No. 1129906

Print this form, complete your details and return to Christopher’s Smile, PO Box , 1363 Lightwater,GU18 5ZS. We will

then forward the information to your bank.

Regular Giving

Please tick the ‘Gift Aid’ box below if you are a UK

taxpayer* so that Christopher’s Smile can reclaim

the tax you will have paid on your donation. For

every £1 you give us we can claim 25p more. To

qualify for Gift Aid, it is vital you give your FULL

NAME, HOME ADDRESS, POSTCODE,