NEUROBLASTOMA NEWS

The Neuroblastoma Society Quarterly Journal

Issue 71 Spring 2013

A co-ordinated European approach

In past newsletters we have looked at some of the international, European and national organisations that serve the oncology community. Here we focus on ECCO. European CanCer Organisation Founded in 2007 , ECCOs aim is to bring together professionals involved in cancer care, research and treatment through organising multidisciplinary meetings and conferences and providing education and training. ECCO also works with policymakers to ensure that the needs of patients, carers and researchers are heard. Consisting of 24 member organisations, ECCO is the voice of over 60,000 professionals in oncology. It is affiliated to many European cancer organisations in order to expand the reach and scope of those it represents. Through its oncopolicy ECCO is able
ECCOA co-ordinated European Approach New Research My Charity Speech Fundraising Stories Sports Report 500 for Alex Donations Page 1 Page 3 Page 6 Page 10 Page 12 Page 14 Page 16

to provide the voice of consensus of European oncology professionals and engage with policy-makers to ensure that cancer stays at the top of the EU agenda. Through its connection with ENCCA (European Network for Cancer Research in Children and Adolescents), ECCO is disseminating information in particular concerning collaboration between currently existing informal paediatric and adolescent oncology clinical trial groups. The intention is to form a European Clinical Research Council (ECRC) to create a European Virtual Institute for clinical and translational research in childhood and adolescent cancers. In the Autumn, the European Cancer Congress will be held in Amsterdam. With a theme of multidisciplinarity, the programme spans the entire
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If you would like to contribute to our work, please send donations to: The Accounting Officer 49 St Asaph Road, Dyserth, Rhyl, Denbighshire, LL18 6HG Cheques payable to: The Neuroblastoma Society Thank you!

Society Trustees Contact Details

Dr Guy Blanchard (Research) 2 Pye Terrace, Cambridge CB4 1DX 07930 988145 research@neuroblastoma.org.uk Mrs Yvonne Boyd (Secretary) 53 Kennington Road, Kennington Oxford OX1 5PB secretary@neuroblastoma.org.uk Mrs Shirley Clark (Publicity) 54 Forest Road, Richmond, Surrey TW9 3BZ 020 8948 2671 publicity@neuroblastoma.org.uk Miss Natalie Cramp (Volunteers/Fundraising) 61 Eastney Street, London SE10 9NR 07825 823723 volunteers@neuroblastoma.org.uk fundraising@neuroblastoma.org.uk Mr James Duberly (Hon Treasurer) The Cottage, 25 Main Road, Stonely St Neots, Cambs PE19 5EH 01480 860225 treasurer@neuroblastoma.org.uk Mrs Susan Hay (Charity Liaison) Trenewth, Burlorne Tregoose, Washaway, Cornwall PL30 3AJ 01208 832574 Mrs Tori Oldridge (Website/Media) Bounce PR, Saddlers House, 4-6 South Parade, Bawtry, South Yorkshire DN10 6JH 01302 719030 media@neuroblastoma.org.uk Mr Stephen Smith (Chairman) 2 Caesar Court, Moss Street, York YO23 1DD 01904 633744 chairman@neuroblastoma.org.uk Mr Ben Sharp (Corporate Fundraising) 9 Yarrowside, Amersham, Bucks HP7 9QL 01494 764378 corporatefundraising@neuroblastoma.org.uk Mrs Charlotte Southern (Membership) 100 Matthews Green Road Wokingham, Berkshire RG41 1JT 07976 705431 membership@neuroblastoma.org.uk Medical Trustees Please contact via The Secretary: Mr Keith Holmes St Georges Hospital NHS Trust Professor Debbie Tweddle Northern Institute for Cancer Research Dr Kate Wheeler Oxford University Hospitals NHS Trust Mr Robert Wheeler University Hospital Southampton NHS Trust
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Editors Note
We begin this issue of Neuroblastoma News with an article about ECCOa European organisation that is helping to bring about a more co-ordinated approach to oncology. With such a (comparatively) small number of cases of childhood cancer each year, multidisciplinaritya team effort in tackling canceris the best way of achieving better patient outcomes. We also look at two more of the projects funded by the Society in last years grant roundwork that is looking at ways of stopping neuroblastoma cells from dividing. And we focus on our fundraisers without whom we could not support such research. This year revenue from sporting events is already looking up under the helpful and energetic eye of Sue Davies. We are very grateful to Sue for taking on this role. If you are planning a fundraising event, do get in touch with Sue or Natalie (details opposite) who will be delighted to help. Please do join us at our Spring Conference and AGM on Saturday, 20 April at St Georges Church, Bloomsbury, London.
Have you been fundraising for The Neuroblastoma Society? Would you like to share your story? Please send contributions and photos (digital preferred) to the Editor at: publicity@neuroblastoma.org.uk Articles for the Summer Newsletter DEADLINE 31 May

New Research funded by The Neuroblastoma Society

We are continuing with brief summaries of the last two laboratory research projects awarded in the Societys 2012 grant round. The other four projects were described in the Autumn and Winter 2012 Newsletters. Neuroblastoma is a cancer of specialised nerve cells involved in the development of the nervous system. Neuroblastoma cells are immature nerve cells that continue to divide and increase in number rather than differentiating into non-dividing mature neurons. Treatment with retinoic acid is currently used to stimulate the differentiation pathway in high risk patients, but unfortunately some neuroblastomas do not respond to retinoic acid. This type of treatment is often called differentiation or maturation therapy. The two projects described below explore new approaches to inducing neuroblastoma cells to enter a maturation pathway and stop dividing, thus causing tumour regression. The medium- to long-term clinical goal of this work would be develop novel or enhanced therapies that will lead to a significant reduction in disease recurrence.

Dr Anna Philpott, Reader in Cancer & Developmental Biology, University of Cambridge

proliferation versus differentiation in Neuroblastoma: towards better differentiation therapy will be directed by Dr Anna Philpott in the Department of Oncology at the University of Cambridge. Dr Philpott is interested in the link between the length of time a nerve cell takes between divisions (known as the cell cycle time) and its state of development. Her laboratory has shown that drugs that increase the cell cycle time can induce normal nerve cells and cultured neuroblastoma cells to differentiate. They have shown that a protein called Ascl1 plays a central role in controlling this process during nerve cell development and in cultured neuroblastoma cells. The premise of this research is that by understanding how the key regulator Ascl1 works, it will be possible to develop methods to manipulate its status and to improve differentiation therapies. It is known that Ascl1 occurs in several forms and that some forms of the protein may be active in promoting cell division and other forms may be responsible for inducing differentiation. Dr Philpott will focus on understanding the properties of the various forms of Ascl1 and on

Cell division and differentiation in neuroblastoma cells

A new research project entitled Manipulating Ascl1-mediated
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identifying which forms are important for slowing down cell division and promoting differentiation. During the two year research project: The role and mechanism of action of Ascl1 will be studied, in particular the identification of the proteins controlling cell division which are switched on by different forms and/or levels of Ascl1 in normal nerve cells and in neuroblastoma cells The specific forms of Ascl1 which are involved in the differentiation in neuroblastoma cells and their mode of action will be identified If successful, this research will find out how to induce differentiation in neuroblastoma cells by manipulating the cell cycle and may ultimately lead to improved differentiation therapies for high-risk neuroblastoma patients.

by Dr Andrew Stoker at the Institute of Child Health which is part of University College, London. Dr Stoker and colleagues have recently discovered that chemical derivatives of the metallic element vanadium have profound effects on neuroblastoma cells. When tested on neuroblastomaderived tumour cell lines in culture, vanadium derivatives either stop the cells from proliferating further, forcing them to turn into neuron-like cells, or induce cell death. They have also shown that the derivatives enhance the beneficial effects of retinoic acid. Vanadium compounds block the activity of proteins call phosphatases (there are 100 or so phosphatase genes in humans). These phosphatase blockers are already known to limit the growth of other kinds of cancers. The premise underpinning the new research is that the phosphatase genes inhibited by vanadium would normally behave by enhancing the survival and malignant properties of neuroblastoma cells. Therefore they will make good targets in anti-tumour therapies. The work carried out in this 2 year research project aims to Identify which phosphatases enhance the survival and malignant properties of neuroblastoma cells and are therefore the likely targets of vanadium derivative Uncover the biochemical mode of action of these specific phosphatises Using this information, develop

A new approach to prevent tumour recurrence

Dr Andrew Stoker, Reader in Developmental Neurobiology, Institute of Child Health A new research project entitled Identification of tyrosine phosphatases that suppress differentiation and promote survival in neuroblastoma cells will be directed
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novel drugs that inhibit the action of these phosphatases and test them in preclinical models for neuroblastoma If successful, this research will set the foundation for the development of new drugs that can be used alone, or in combination for example with retinoic acid, to induce differentiation and/or cell death in neuroblastoma cells and preclinical models for neuroblastoma. The application of such drugs, or combination of drugs, would lead to reduced disease recurrence in neuroblastoma patients.

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Spring Conference & AGM

This years Spring Conference and AGM will be held at St Georges Church, 6-7 Little Russell Street, Bloomsbury, London, WC1A 2HR on Saturday, 20 April 2013 beginning at 11am. We hope to have a speaker on current research but the focus of the day will be on our fundraisers. The conference will be followed by a light lunchwe hope you will be able to join us.
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spectrum from basic, applied and translational research to practice, treatment, care, prevention and advocacy for cancer patients. In the paediatric oncology track, there will be sessions on Targeted drugs and Personalised Medicine and The Future of Paediatric Oncology in Europe. At the core of ECCOs activities is the philosophy that every cancer patient deserves the best. To help achieve this ECCO established a Patient Advisory Committee to provide a platform for patient organisations and those involved in caring for cancer patients to express their views and ensure that the issues and challenges facing them were known. At the European Cancer Congress this year there will be a Patient Advocacy track and the Neuroblatoma Society hopes to have representation on these days. A further function of ECCO is to facilitate education and training of medical students and young professionals in the field of oncology. Organised courses and workshops, as well as e-learning, are available along with advice on professional development in the main cancer disciplines: medical, surgical and radiation oncology. ECCO strives to achieve its vision of providing the best possible outcome for cancer patients by integrating everyone in the oncology community a co-ordinated European approach.

My Charity Speech by Alfie Hollingsworth

We were delighted to hear about Alfies presentation to his school on The Neuroblastoma Society. He tells us his story: charity because my cousins best friend died in January 2013 from neuroblastoma. He was only 5 years old. I found out as much as I could about neuroblastoma and made a PowerPoint presentation. After everyone in my class had made their presentations we voted and Harriet and I won. My teacher said he had never seen anybody looking so upset about winning something! This is because I realised I would have to do my presentation in school assembly. I spent the next week practising and practising until I knew my talk by heart. I also asked The Neuroblastoma Society to send me some stickers which I could give to people who wanted to vote for me. They also sent balloons and posters and some really nice letters wishing me luck. On the Friday morning before the assembly I was very nervous. I was worried about talking to so many people but really wanted to win. There were six people doing charity speechestwo from each class. The charities were: Childrens Hospice South West, The Leukaemia and Lymphoma Society, Little Bridge House (a childrens hospice near school), Great Ormond Street Hospital, Cancer Research and of course The Neuroblastoma Society. I realised that even if I did not win, most

Every year my school chooses a UK charity to support. First every person in Year 6 chooses a charity and talks about it to their class. Each class then votes for their favourite and those people have to do their presentations in assembly to the whole school. The winner is then the one voted for from those presentations. For my charity I chose The Neuroblastoma Society. I chose this
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of these charities would still help children with neuroblastoma. I was really pleased with how my presentation went and the balloons were very popular with the younger children so I thought I had a good chance of my choice of charity being the school charity for the year but in the end, after a very close vote, Harriets charity which was Cancer Research was announced as the winner. I was disappointed that The Neuroblastoma Society did not win. I had found out lots about it and knew it was a great charity. However, even though I did not win there were three good things that came from the charity speeches. Firstly I had told my whole school about neuroblastoma so they now all know about it which they might not have done before. Secondly, I realised that I could make a presentation to my whole school and did not need to be nervous. Lastly, I was pleased that the winning charity would help with research into different cancers and that one day, with the help of all the doctors and scientists, the funds raised in my last year at Junior School might still somehow help children with neuroblastoma. Thank you, Alfie!
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Teddy Tombola
Our thanks again to the team at Fighting Neuroblastoma for their work in supporting the Society. On 17 March they held another Teddy Tombola on the charity barrow at Gateshead MetroCentre, raising a wonderful 230.58 to help fund neuroblastoma research. Thank you Lou and Justinewe really appreciate all your hard work!

Order your chocolate eggs today and raise for us this Easter just by shopping online via Give As You Live: http://www.giveasyoulive.com/join/ neuroblastomasociety.

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Fundraising Stories
A Mini Fun Run!
Avon Valley Classic Mini Club was set up by Phil Reeves in memory of his granddaughter, Amelia Rose Price, who lost her fight to neuroblastoma in 2007. All money raised through events and collections will be going to the Society. The first Mini Cruise, Amelia's Run, was held on 22nd April, 2012. It was a 37 -mile, just over three-hour run through Cheddar Gorge and on to Brean with some stops along the way. It was a brilliant day, enjoyed by everyone. 11 classic minis took part visiting some of Amelia's favourite places. The Club takes part in other mini shows and events, collecting money for the Society and raising awareness of neuroblastoma and the Society's work. The total of 260 was raised last year. On Sunday, 17th March 2013, the 6th Anniversary of Amelia's death, Amelia's Mini Run will be taking place again with 25 cars expected to take part and driving the same route as last year.
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Dougies Oat Bar

Mrs Tamara StewartWilson from Fife has been supporting the work of the Society in memory of her son, Dougal Stewart Wilson, who died of neuroblastoma stage 4 in 2003. Last summer Dougies Oat Bar, seeds and cranberries flapjack, was created with help from Tamara's younger son Archie in memory of Dougal and his delight over healthy but utterly scrumptious food. Fortunately, Cam Laird, a very good friend who owns Cairnie Fruit Farm in Cupar, Fife and a huge fan of their exceptional homemade oat bars, was more than happy to sell them at their Farm Shop. They are all delighted to donate the generous proceeds of Dougies Oat Bar debut to The Neuroblastoma Society and hope for many more bars to come!

Selling on ebay

Back in the saddle

Chris Ewell, Sittingbourne's Can Man, is back on the road on his fifth bike, collecting cans and raising money for the Society. Bill Jones, barman at Miller's Bar, Milton Regis, where Trudi Eden is landlady, suggested helping Chris and supporting the Society. Thanks to a community effort, 1,100 was raised for a replacement bike from Pashley Cycles in Stratford-upon-Avon. A big thank you to the staff at Miller's Bar and their customers for their generous donations and helping Chris with his fundraising for the Society. We are very grateful to Trina Hughes from Warwickshire for what must have been a very difficult decision. It is sad to part with such sentimental items but the resulting donation will be used to help find better treatments and a cure for this devastating disease in Craigs memory. Thank you, Trina. If you have items to sell, please consider donating the proceeds to the Society through ebayits so easy!

Jemmas Headshave
A very brave Jemma Armstrong has had her head shaved for neuroblastoma research. Jemmas son Kian (pictured left), who is currently going through treatment for neuroblastoma, was on hand to make the first cut.
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Sports Report
The life of a sports co-ordinator is never dull and one thing I've found out is that no matter how many spaces are available in certain runs you can never have enough. I am very pleased to say we have 10 runners in the London Marathon this year as some places were deferred from last year. This is really special and the participants should be proud to be part of a decimal number that means big money for the Society. We also have an 11th who got his place through the ballot. Not quite a bakers dozen but a pretty good number. Best of luck to all our runners. Also this year we have 6 runners in the Brighton Marathon which is on 14th April and although it took a while to fill these places I hope it means that we will get more interest in future years. The attractions of the seaside have finally proved irresistible and we wish them luck and good times for their efforts. Part of the run will be televised this year so try to look out for the distinctive blue running vests or the yellow t-shirts. Get yourself on the waiting list for next year! The Edinburgh Marathon is in May; this year we have 5 runners and 1 in the 10k which takes place the day before and applications for the shorter races including the half marathon are open until the 30th April. Other events run by the same group include the Bournemouth marathon festival which
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takes place over 5th and 6th October this year. We are a partner charity and can approve you as one of our fundraisers for these events. Go to the relevant website which will direct you to our charity. Coming up later in the year the Great North Run is already oversubscribed and our team of runners will be settling down to their training for the 15th September-thanks to all our runners and all those who wanted to run for us. We still have guaranteed places in the Bupa London 10k on 27th May and the British Lion London 10k on 14th July. How about a team challenge? The Yorkshire Season Ticket is for three 10ks you can sign up on www.forallevents.co.uk We already have a runner in the York 10k-will you be the one that runs all three? In the ultimate challenge you can support Chris Noble in his 500 for Alex. Chris has already completed his first event in his bid to complete 500k hiking, running and cycling around Scotland in memory of his son Alex Noble. You can follow his progress on Facebook or donate here: www.justgiving.com/500forAlex If you dont fancy anything too long why not make a family event of the Big Fun Run. These runs take place every year around the country and at 5k can be walked, run, bunny-hopped

or pushed. You can sign up on the website www.bigfunrun.com. We can supply you with t-shirts or running vests and other fundraising advice. Remember you can always organise your own sporting event and we can support you in this. We have a runner in the Coniston 14 (March) and the Belfast Marathon (May). Dont forget to get in touch about your sporting fundraising challenge. Whatever you decide to do-have fun! Sue Davies sports@neuroblastoma.org.uk

Lexys Legacy
Jenny Green will be the first of many running the Virgin London Marathon in memory of Alexander Strong. Every year she hopes to encourage one or more people who follow Alexs Facebook page to run the race in his memory. Friends and followers will be asked to ..donate just 10.00 to Lexy's Legacy for the marathon run and this could then become HIS legacy....It would raise awareness but most of all his memory would be kept alive and we would be doing it for him. A lovely idea, Jenny, thank you! http://www.justgiving.com/LexysLegacy If youre in training for an event to support the Society, please do post photos on our Facebook page or tweet them @NeuroblastomaUK wed love to hear from you!

Glover 10k
For some years now Glover and Lucy Bailie have organised a 10k event to raise funds for the Society in memory of Glovers niece Gabriella. Our thanks! Thanks to everyone who came and took part in Sunday's Glover 10k. How lucky were we with the weather?? Kudos to Major Singleton for winning. It was lovely to see you all and we are so grateful for all your kind donations to the Neuroblastoma Society (including from those who couldn't actually make it on the day). So far we've raised over 500 which is fantastic . Thanks again and see you next year! Lucy, Glover, Emilia and Thomasina x

Ellies Page
Ellies running the Virgin London Marathon for this and got off to a flying start with her fundraising. How about this for increasing your visibility: Pussy Cat Doll and 'Got to Dance' judge Kimberly Wyatt just sponsored me and tweeted about the charity with the just giving link to her 126,000 followers . And then: Was tweeted by pop group JLS today to their 1 million followers !!!! . Ellie, you certainly know how to get noticed! http://www.justgiving.com/ EllieFitzgerald

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500 for Alex

Chris Noble has set himself a bit of a challenge, in memory of his son: This year, 2013, my son Alex should have been celebrating his 5th birthday. Inspired by his life, and in an effort to get myself fit and give me a focus to do that, I have resolved to run (or hike, cycle, kayak (?!) where appropriate) 500 km around Scotland in a series of events all before Alex's birthday (16 September). It is a serious* challenge, but one which I am equally serious* about completing.
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Sunday, 26 May - Campbeltown Runners World Magazine voted Best Half Marathon in UK
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Meadows Half Marathon - Sunday, 3 March - Edinburgh - 7 laps of a course round the Meadows (completed in 1.44:56) Kilomathon - Sunday, 17 March Edinburgh - 13.1km (Ocean Terminal to Murrayfield) (completed in 1.02:12) St Andrews 10k - Saturday, 6 April St Andrews - West Sands - Chariots of Fire finish! Pentland Hills Half Marathon Sunday, 14 April Pentland Hills Flotterstone Inn Start/finish Maggies Monster Bike and Hike Saturday, 4 / Sunday, 5 May - Fort William to Inverness - team of 4 - Ft William bike to Ft Augustus - 31 miles. Then 41 mile Hike overnight to Inverness Mull of Kintyre Half Marathon Page 14

7 Hills of Edinburgh Challenge Sunday, 16 June - 14 miles. Calton, Castle, Corstorphine, Craiglockhart, Braid, Blackford, Arthurs. In that order. Choose your own route... Corrieyairick Challenge - Saturday, 6 July (Aviemore/ Kincraig) - start Ft Augustus - Run via Corrieyairick pass to Garva Bridge (17 miles), then Bike via Laggan, Newtonmore, Kingussie to Kincraig village nr Aviemore (26 miles) Dundee Half Marathon - Sunday, 21 July - Dundee (Camperdown Park finish in Broughty Ferry) Coll Half Marathon - Sat urday,17 August - Isle of Coll (inner Hebrides) - multi terrain Coast to Coast (Rat Race Event) Saturday, 14/Sunday, 15 Sept Nairn to Glencoe (nr Ft William)

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Day 1 - Nairn to Ft Augustus (run 7 miles, cycle 48 road, kayak/run 1.5). Day 2 - Ft Aug to Ft William to Isles of Glencoe (off road bike 16, road bike 17, trail run 14, kayak 1)

TOTAL - 505km! #yikes

*idiotic You can follow Chris on Twitter @500forAlexand donate at http:// www.justgiving.com/500forAlex Thank you so much Chris!

room and asked me to sit with Alex. Not long after he left Alex turned to me and totally out of the blue with such determination said "You can do it!". It took me a few minutes to realise Alex was talking about the marathon. He was such a smart little boy, who was so brave and inspirational when fighting neuroblastoma . This has made me even more determined to do this for Alex and his entire family and I know his words of You can do it! will stay with me and inspire me to complete this marathon. Alex unfortunately lost his battle with neuroblastoma on 25th September 2012 but he is always going to be remembered for being an amazing son to Sarah and Chris, being a great big brother to Luke, for his quirky personality, his love of Lego, and also just for his determination to fight and prove everyone wrong. Alex was loved by all, he touched so many people, and he will never be forgottenhe will always be in our hearts. Donate at http://www.justgiving.com/ EmmaChristie16

Emmas Marathon
Emma Christie tells us the motivation behind her challenge: A lot of people think I am mad for running a full marathon but I have never been so determined to do anything as I am to complete the 26.2 miles of the Edinburgh Marathon. I will never forget Alex Noble and through working with Alex both at nursery and in the hospital, I got to be part of what he saw as 'normality' in his life which meant a lot to me. I became so close to his entire family and it means so much to me that they are allowing me to run this marathon in his memory. I will always remember the day I came in and spoke to Alexs dad, Chris, about doing a marathon and he said he knew a few people that had done marathons who had found them so hard physically and mentally that they wouldn't be running one again anytime soon! Then Chris left the
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Donations Thank you for all donations received by the Society. Every single one makes a difference.
Mrs EM Riden from Kent, donations received in memory of her husband Mr Bobbie Percival Riden. Further donations from Robinson Lodge No 2046, proceeds from their fundraising events, to support the Society's work. Debbie Beevor from Hatfield, in memory of her daughter, Hayley O'Brien who lost her fight against the disease in 1993. Thank you to Debbie and family and friends for their 20th year of marshalling at St Albans Half Marathon. Eve Dearlove from Christchurch, in memory of her son Paul, who died in 1968 from neuroblastoma aged 3years 11 months. Michael and Pam Kennett from West Yorkshire, donations collected over the last 12 months in memory of their grandson, Thomas Babbage, who would have been 19 last November. Mr & Mrs B Payton from Bristol, to support the Society's work. Mrs Victoria Cleall and Mrs Sandra Wateridge from Poole, in memory of Zoe Dobson, a donation in lieu of sending Christmas cards at work. Mrs Spink from North Yorkshire, proceeds from Knaresborough Young Farmers Club and Royal Marquee Festival 2012 donated
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in memory of Sadie-Rose Clifford. Mr &Mrs Peters from Great Wakering, in lieu of flowers at the funeral of a neighbour, donated in memory of their beloved grandson, Tom Willson. Mrs Angela Hogman from Sussex, in support of the Society's work. Michael and Anita Fielder from Eastleigh, in memory of their beloved grandson, Alex Blair, who lost his battle with neuroblastoma in August 2009 aged 3. Mr D J Whitlow from Rochdale, to support the Society's work. Mrs Margaret Sutherland from Glasgow, to support the Society's work. Quill Pinpoint Ltd from Manchester, in memory of Gabriel, a dear nephew of Mrs Clare Tuck, who died recently after fighting neuroblastoma. Justine Kilin and her Fighting Neuroblastoma Team from Newcastleupon-Tyne, proceeds from their Winter Ball, Teddy Bear Tombola and their annual Family Christmas Party. Custom House Medical Teaching & Training Practice from London, money raised throughout the year by their Receptionists, Secretaries and Administrators, in support of one of their staff affected by neuroblastoma. The Pavilion Theatre in Rhyl, thank you to Val Simmons for allowing our annual collection on Christmas Eve to take place. Mr & Mrs Worsley from Sevenoaks, a Christmas donation to support the Society's work. Sue Leaver and her colleagues at HM Revenue & Customs in Southend-on-Sea, Essex, raised money by making Home

Brew Beer and then selling raffle tickets to win it. Also, a donation in lieu of sending Christmas Cards. Mr GW Spring & Mrs CS Spring, to support the Society's work. D C & B Adams, to support the Society's work. St Peter and St Paul's Church, King's Sutton, collections made in memory of Raphaella Poppy Moggridge the baby daughter of one of the members of their congregation, who died of neuroblastoma last year. Matthew and Kate Free from Hertfordshire, a donation towards the work of the Society, inspired by their good friends Ben and Miranda Sharp's son Alex. June Drennan from Glasgow, in memory of her grandson Grant Sutherland to mark the 11th anniversary on 28th December 2012. Ian Sutherland from Edinburgh, in memory of Grant Sutherland of Glasgow, his Grandfather, the late Ronald Sutherland and Ian's wife, Alie Sutherland. Mrs Shelagh Ashley from Bedford, money raised by her Christmas raffle thank you for donating one of your watercolour paintings again. Ben Sharp further donations comprising: a collection round the streets with Santa in December, a gift from Ben's aunt, Mrs Joan Watts, proceeds from sale of firewood, Laing matched giving as one of their employees and Ben's friend, David Bradbury, helped Ben to collect with Santa, Moneta matched giving as Ben's friend and fellow collector, Jonathan Berryman, works for them.
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Further donations from Keith and Caroline Hunt and from T J Hunt in memory of John Hunt. Downham CoE Primary School from Billericay in Essex, money raised at their Church Carol Singing, in memory of Mrs Linda Hayes's son, Neil Hayes. Mrs Maureen Stevenson from Tadworth, a donation resulting from taking some unwanted clothes to Cash4Clothes recycling. Liverpool Charity and Voluntary Services, a donation from The Susan Bibby Fund. In memory of Mia Ashmore, who passed away in August 2007 aged 3 1/2, from Nanny Norma. Janet and Colin Dobson from Christchurch, in memory of their beautiful granddaughter, Zoe, who sadly died on 29th January 2011, aged 22 months. The Anderson Orr Partnership from Oxford, in lieu of Christmas cards to clients, to support the Society's work. Graeme & Jenny Wade from Essex, in lieu of sending Christmas Cards. Trina Hughes from Nuneaton, proceeds from the sale of DVDs donated by Mr Parker, a work colleague, in memory of her son, Craig David Ashby, who lost his life to neuroblastoma 01/04/92 aged 4 and years. Mrs Fiona Harrison, in memory of Luke Chadney. Mrs M I M Price, to support the Society's work. Kingston Smith Chartered Accountants from London, chose to support the Society as it was nominated by one of their employees.

Mr G.L. Wright and Mrs B Wright from Chatham, in memory of their son, Christopher James Wright. Mrs I Warner from Welling, in memory of Christopher James Wright. Mrs Ruth Whall from Wellington, to support the Society's work. Mrs Margaret Meale from Wellington, to support the Society's work. Julie Lynch from Crawley, raised money by selling her handmade jewellery over the Christmas period in memory of her grandson, Ben Stevenson. Mrs Anwen Davies from Llandyrnog, to support the Society's work. Julie Thompson from Gleaston in Cumbria and her mum-in-law, Audrey Thompson, proceeds from their recent fundraising event in memory of Julie's son, Declan. Julie and Audrey decorated a tree at their local Church Tree Festival and were holding a tombola stall every weekend. Residents and Friends of Anchor Court, Dalton-in-Furness, proceeds from their weekly coffee mornings in memory of Declan Thompson. A donation in memory of Declan Thompson from Mr and Mrs P Morton from Cumbria, Declan's auntie and uncle. The Kings Fund from London chose the Society as the recipient of the proceeds from their Christmas raffle this year. The Society was nominated by a member of staff whose cousin died of neuroblastoma in August 2012. Mr Trevor Darnes from Boston, proceeds from a collection box at Mr & Mrs Cooper's snack bar the largest amount to date. Trevor's daughter, Ashleigh, was
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diagnosed with neuroblastoma stage 4 at the age of 2 1/2 years, beat the disease and is now 15 years old. Cast School of speech and Drama from Belfast, to support the Society's work. Dean Porter from Felixstowe, proceeds from their annual charity event at Felixstowe Labour Club on 5th January. Another donation from Buttercups & Chalfont Park Day Nurseries from London. Hythe House Support Limited from Kent, to support the Society's work. Mrs Jemma Armstrong from Sunderland, had her head shaved on 8th December 2012 and raised a great amount for the Society. Jemma son, Kian, has been receiving treatment for neuroblastoma since March 2012. Jennai Alberts, proceeds from the sale of jellybeans during and after a Christmas show, Jack and the Beanstalk, by children from Dandelion Theatre Arts drama and dance school in Epsom. The Caleta Hotel, Gibraltar, proceeds from their Chess Festival 2013. Justine Kilin from Newcastle upon Tyne, further donations comprising a donation from her Fighting Neuroblastoma Team (money raised from Whickham Cottage Crafts Sleigh bells and a donation from Winter Ball in November 2012) and the money from selling Santa letters by Team Valley Printers in Gateshead. Ysgol Penmorfa from Prestatyn, proceeds from a cake stall held by Class 4G. Aviva York, proceeds from a recent fundraising event by Aviva staff. Mrs L M Wilde from Stourbridge, donations received in memory of her

father, Dr James William Hall, who passed away on 22nd January, aged 100 years. Mrs L A Goodall from Herefordshire, to support the Society's work. Leigh Central Primary School from Leigh, proceeds from a coffee morning in aid of Braiden Lee Prescott. Mrs Pauline Ellis from Tadworth, in lieu of flowers following the death of a dear friend Ava and in memory of a friend's grandson, Ben Stevenson. Adam Miller, sponsorship money from running the Great South Run. Steven Broadbent from Huddersfield, contents of a collecting box at the Huddersfield Irish Centre. DHL UK Foundation, a donation to the Society through their matched scheme in recognition of their staff, Livingstone site, fundraising efforts in summer 2012 in memory of Niamh Curry. Sue Leaver, in lieu of flowers at a friend's funeral and in memory of Tom Willson. Donations in memory of the late Mrs Bridie Teresa McTeague and in memory of Miss Sophie McGuire. Ben Sharp, donations received following Adventures for Alex talk on 1st February and donations received in memory of his son Alex. Chalfont Art and Framing, sent email Christmas greetings to all customers and suppliers, and donated the money that would have been spent on cards and postage. Amersham Rotary, in memory of Alex Sharp. Julia Stevenson from Crawley and her

friend, Bridgette Russo, held a table top Craft Sale in November and split the money raised between The Matthew Russo Foundation and the Society in memory of Julia's son, Ben Stevenson. Dawn and Rob Muggridge from Thetford, in memory of their beautiful daughter, Chloe Peaches. The money was raised over the last year from late stays, early arrivals and various events at the Camping and Caravanning Club, Thetford Forest. Thank you to the family, customers and staff for their continued support. Miss Louise Sutherland from Glasgow, in memory of Grant Sutherland. Mrs Samantha Hollingsworth from Wellington, to support the Society's work. A donation from Jenny Brignall and her friend Thirza from East Yorkshire, instead of buying Christmas presents for each other.
If you would like to contribute to our work, please send donations to: The Accounting Officer 49 St Asaph Road, Dyserth, Rhyl, Denbighshire, LL18 6HG Cheques payable to: The Neuroblastoma Society Thank you!

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make a donation today

https://mydonate.bt.com/charities/theneuroblastomasociety

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The Origins and Aims of the Society

The Neuroblastoma Society was founded in 1982 by the parents and friends of five year old Matthew Oldridge who was dying from neuroblastoma. The purpose of the Society is threefold: 1. to raise funds for research into the disease to improve both its diagnosis and treatment; 2. to offer the opportunity for parents and friends to give each other mutual help, support and comfort; 3. to inform parents and supporters on the latest treatments and any medical advances relevant to the disease through our quarterly newsletter. The Society is administered by Trustees, all of whom are unpaid volunteers. This means that around 95% of your donations to the Society go directly to fund research into neuroblastoma. We welcome help with all aspects of the Societys work. If you would like to be involved, please contact the Chairman, Steve Smith, by email at chairman@neuroblastoma.org.uk or by phone on 01904 633744, for an informal chat. OUR HELPERS
Annual Draw Befriending Collecting Boxes Donations Monthly Draw Club Newsletter Packers Parents Booklet Pin Badges Sports Events Stamp Appeal Website Co-ordination Mrs Tori Oldridgeannualdraw@neuroblastoma.org.uk Mrs Caroline Nicolaidesbefriending@neuroblastoma.org.uk Mrs Sue Daviescollectingboxes@neuroblastoma.org.uk Mrs Wanda Davies, Accounting Officer, 49 St Asaph Road, Dyserth, Rhyl, Denbighshire, LL18 6HG donations@neuroblastoma.org.uk
Vacant

Mrs Maureen Stevenson & Mr Frank Townley Mrs Eileen Roweparentsbooklet@neuroblastoma.org.uk Mrs Mary Waterhousepinbadges@neuroblastoma.org.uk
Mrs Sue Daviessports@neuroblastoma.org.uk

Mr & Mrs C Wade, 13 Longacre Road, Cressing, Braintree, Essex, CM77 8HG Mrs Tori Oldridgemedia@neuroblastoma.org.uk

SOCIETY HELP LINE

FOR INFORMATION AND GENERAL ENQUIRIES

020 8940 4353

www.neuroblastoma.org.uk