SpeakOut - oraclecancertrust.org · 1ORACLE CANCER TRUST NEWSLETTER Find out more at oraclecancertrust.org ANCER SpeakOut rust New data laws - keep in touch SUMMER 2018 Oracle welcomes

ORACLE CANCER TRUST NEWSLETTER · Find out more at oraclecancertrust.org 1

LEADING RESEARCH INTO HEAD AND NECK CANCER

SpeakOutThe newsletter of Oracle Cancer Trust

New data laws - keep in touch

SUMMER 2018

Oracle welcomes new Patron Sir Michael Morpurgo

We are delighted to announce that acclaimed author Sir Michael Morpurgo has agreed to be our new patron following the retirement of HRH Princess Alexandra in late 2017.

Head and neck cancer is a cause particularly close to the heart to Sir Michael, as he has recently undergone treatment for cancer of the larynx. Following changes to his voice, he sought advice resulting in a cancer diagnosis.

Says Michael: “We all know that cancer is out there. How do we deal with this shadow over our lives? It is impossible to ignore, though most of us should like to. We all do know someone who has had it, and is in remission or cured, or who has it and is still in treatment, or someone who died of it. We give to cancer charities because we are so aware of it, of the need for ever more research to beat it. We do our bit, we think. And then we try to forget it, hoping all the time that we will not get it ourselves. That’s a common enough mind set, and it was mine.

“Not any more. Last year I was diagnosed with an early cancer of the larynx, and my perspec-tive on so much changed. Suddenly the dis-ease became central to my life at home, and to my work. It had to be confronted, dealt with, both surgically, and psychologically. And now, with excellent prospects for a full recovery, with my voice finding new strength, I have time to look back at the whole experience, at how fortunate I have been.

“Years of research, of developing ever more sophisticated treatment, the skill and dedication of surgeons and nurses, have given me and so many others with throat and neck cancer, the best chances of full recovery. But more vital research is needed.

“Oracle Cancer Trust came into existence to do just that, and is making a significant contribution to the prospects of patients.

“I recently had the great honour to be asked if I would become the new Patron of Oracle Cancer Trust, succeeding HRH The Princess Alexandra, and I had no hesitation in accepting. I am one who has benefited hugely from the great work of this charity, and am so so grateful. So I shall do all I can as the new Patron to help Oracle in its great work.”

Says Oracle’s Chairman, Peter Rhys-Evans:“We are hugely honoured that Michael has joined Oracle as Patron to help us raise the profile of pioneering research work discovering kinder and more effective treatments for head and neck cancer. Head and neck cancer is now the fastest-growing of any cancers in the UK but surprisingly until diagnosis, patients have little awareness of what it is and how current treatments can cause with long-term side effects.

“I would also like to take this opportunity to thank HRH The Princess Alexandra for her patronage of Oracle over the past six years. During this time she has helped raise awareness of Oracle’s work, supporting us as we have grown to become the UK’s leading head and neck cancer research charity.”

New project focuses on taste following radiotherapy

HPV vaccination debate reaches the House of Commons

ORACLE CANCER TRUST NEWSLETTER · Find out more at oraclecancertrust.org2

Oracle News

Summer message from our Voluntary CEO, Jamie Newall

Dear Supporters,

Welcome to our Spring/Summer newsletter. As many of you know Princess Alexandra has retired from being the Patron for Oracle Cancer Trust. I would like to take this opportunity to thank her for her tireless support for us over the last six years. We have been so fortunate to have such an informed and passionate Patron.

It is with great pleasure that we announce that our new Patron will be Sir Michael Morpurgo. You will read much more about him in the article in this newsletter and we are delighted that he has agreed to take on the role.

Oracle Cancer Trust relies not only on its donors, both large and small, but also on its supporters, who give their time and effort to help us whether through pro bono support, volunteering or raising money.

I have written and spoken before about how much our supporters do for us, and was fortunate enough to meet one such supporter at the Oracle/Heads Up joining forces evening last year. Angie Bryant has been supporting Heads Up since her own diagnosis and treatment for neck cancer in 2011. She has held regular annual events and this year, held her first event for Oracle Cancer Trust. She organised a fantastic evening, a Masquerade Ball, raising £6,400 for Oracle. When I congratulated Angie on holding such a well organised event she explained that when she had recovered from her treatment she would raise money for head and neck cancer research. Angie is just one of our many inspirational supporters.

Since the last newsletter we have continued to strengthen our governance moving from having our financs ‘examined’ to being fully audited. This required a substantial amount of work, that should not have to be replicated every year. Being audited is a pre-requisite to enable us to apply to a number of larger Trusts and Foundations for funding. I would particularly like to thank Sarah Bender, our Head of Operations, and Graham Atkinson from our Finance and Investments Committee for all their hard work in achieving this goal.

As the new EU General Data Protection Regulation (GDPR) is coming into force this month, if you have not already, do respond to our communications asking for your permission to keep you on our database. We do not share or sell our data with anyone but keeping your details allow us to keep you updated about the charity and its events.

Finally I would like to thank Emma Colliver for all her hard work for us over the last two years as our Head of Fundraising. Emma has secured a funded PhD at the Francis Crick Institute and will be leaving us in July. We are both sad to see her go and very proud of her achievement. Emma will continue to support the charity and you will see her at events and in the newsletter, and once again I want to thank her for her hard work and energetic support for the charity.

Jamie [email protected]

Oracle’s Voluntary CEO Jamie Newall

Contact us:Oracle Cancer Trust32-36 Loman StreetLondon SE1 0EHTelephone 020 7922 7924 [email protected] www.oraclecancertrust.org

Head Office:CEO (Voluntary): Jamie Newall [email protected] of Marketing and Operations: Sarah Bender [email protected] of Fundraising: Emma Colliver [email protected] Administration: Linda Wimble [email protected] and produced in-house

Thames Valley Region:Volunteer Co-ordinator: Ray Derkacz [email protected] Co-ordinator: Leigh-Anne El-Barhdadi [email protected]

Company Registered in England Number 7125497 Charity Number 1142037Registered Office: 32-36 Loman Street, London SE1 0EH

3ORACLE CANCER TRUST NEWSLETTER · Find out more at oraclecancertrust.org

Oracle News

New data laws - do keep in touch

As many of you will already know, data laws throughout the EU are changing. On 25th May 2018, the new GDPR laws came into force. These regulations essentially increase consumer power, ensuring that consumers are made fully aware with how their data is used and processed, and allowing them to explicitly choose how organisations can interact with them. Even if you have previously attended events such as The Glory of Christmas or donated to Oracle, we still require your explicit consent for us to keep in touch with you by email and other forms of electronic communication. We typically send out 2-3 newsletters a year and other ad-hoc information regarding supporter events and charity news. If you could like to receive email updates and would prefer to receive this newsletter by email, please contact us at [email protected], call us on 020 7922 7924, or visit www.oraclecancertrust.org/opt-in. Finally, if you would prefer to unsubscribe from all Oracle communications please email [email protected], confirming your preference to opt out of both email and post communications. Oracle will always treat your data with respect. We will never share/sell your information with third parties. You can view our charity’s Privacy Policy on our website at www.oraclecancertrust.org/privacy-policy.

Veteran DJ “Diddy” David Hamilton hosts our 2nd Quiz Night

Guests enjoyed a balmy evening on the banks of the River Thames to battle it out for our second annual quiz night which was held at the historic Craven Cottage, home of Fulham Football Club in South West London.

The evening was organised with, and jointly benefitted The Fulham Football Club Foundation which supports local initiatives in the community, particularly the young and elderly.

We were delighted that DJ “Diddy” David Hamilton, a lifelong Fulham Football Club supporter acted as host and quizmaster and included some tough musical and football rounds that kept everyone guessing.

As well as the quiz we held a silent and live auction with the signed shirt of one of football’s young stars of the future, Ryan Sessignon, raising over £500 and a chef’s table at Benihana raising £400. In all we raised over £3,000 on the night and are very grateful to everyone who supported the event.

The spoils, once again, went to Aunty’s Army who were victorious for a second year running. We look forward to announcing the date of of our third quiz night soon!

Quizmaster “Diddy” David Hamiton

Winning bidder of the signed Ryan Sessignon signed shirt Aunty’s Army celebrate being

announced the winning team

Pitch watering during the heatwave at Craven Cottage

Auction prize winners enjoy a pro-tennis challenge

World Senior ladies tennis champion Jurate Hardy generously donates her time to support Oracle’s fundraising offering a tennis clinic at the exclusive Roehampton Club in London. Alastair MacDonald was the lucky bidder at our 2017 Golf Day and took up the challenge with his wife Anne on a beautiful Spring day. Jurate arranged a series of drills and a light hearted competitive match which was rounded off with lunch at the club.

If you’d like to challenge Jurate to a game of tennis in support of Oracle get in touch [email protected]

Jurate runs through some net drills at The Roehampton Club

(L to R) Jurate Hardy with Alastair and Anne MacDonald


Dear Supporters,

It is with a heavy heart that I rite to let you know that I will be leaving Oracle in July 2018 after two years spearheading the charity’s fundraising efforts.

I am very sad to be leaving my role as Head of Fundraising but look forward to supporting the charity in new ways and by continuing to attend the charity’s brilliant events.

The good news? I’ve been so inspired by Oracle’s lifechanging work that I’m off to do my own cancer research!

Two wonderful yearsFrom attending your own events – tea parties, quiz nights, cycle rides, dinners, balls…– to helping bring our research to life to new donors, it has been a jam-packed two years, and it has been a pleasure to support so many of you in your own fundraising.

Oracle’s own events have also been a highlight. It has been brilliant to meet so many of you at our Research Events, Glory of Christmas Concerts, Golf Days and Quiz Nights, and I look forward to attending these events for years to come.

I’m also very proud that we have managed to increase the amount we’ve fundraised year on year since 2016, first by 15% and then by another 50%. Now, we are finishing our 2018 financial year having raised over £ ½ million for lifechanging head and neck cancer research. Crucially, with more fundraising we have been able to fund more pioneering head and neck cancer research.

Thank you to my colleaguesI must take this opportunity to thank my colleagues and the volunteers at Oracle. We are a small team and I am indebted to my colleagues in the office – Sarah and Linda – and to the charity’s volunteer CEO Jamie and the Trustees for their ongoing support.

Special thanks must go to Trustee Nicola Ridges-Jones for her personal mentorship and her fundraising support, having herself raised over £100,000 for the charity in memory of her late father.

What I’ll be doing nextCancer research has always been a personal cause. Meeting you and hearing your personal stories has made me even more passionate to do my bit. That is why I’m now off to undertake my own cancer research!

I’m excited to be beginning a four-year stint as a PhD student scientist at the new Francis Crick Institute in London. I’ll be working with Cancer Research UK’s Chief Clinician Professor Swanton FRS, trying to better understand what drives tumour evolution. I’ll be plugging away on a computer, analysing the large swathes of genetic, immune and imaging data we’re collecting about lung cancer tumours and trying to understand why these tumours develop as they do. Ask if you’d like to hear more!

So thank you once again for helping to make these two years so memorable and so special for me. Whilst I will be moving on from my Head of Fundraising role, this isn’t the end of my relationship with Oracle. The charity is a very special one and one that is undertaking vital work. So thank you again for supporting me and this very worthy cause. And keep in touch!

Emma

Oracle Head of Fundraising to join prestigious Crick Institute

Oracle News

Working at the 2018 WealthBriefing Awards

With the team at The Glory of Christmas Concert

At the annual BAHNO Conference


News and Events

HPV Debate reaches Parliament

Eminent oncologist and Oracle’s Honorary Trustee Professor Chris Nutting secured a debate in The House of Commons in early May to increase pressure on the Government to change it’s policy on including boys in the HPV vaccination programme.

The government’s Vaccination Advisory Committee (JCVI) began to look at whether boys should receive the vaccine in 2013 but have not reached a decision. The estimated cost of including boys in the vaccination programme is around £22m a year, but until now, the NHS’s Joint Committee on Vaccination and immunisation (JCVI) has argued this would not be ‘cost-effective’, claiming it is cheaper to treat the cancers caused by HPV. The incidence of HPV-related cancers in men is increasing sharply, particularly head and neck cancers. Although statistics vary by country, the Center for Disease Control in America reports that 63% of oropharyngeal cancers are HPV positive.

The debate received significant media coverage with write-ups in all the major daily newspapers including The Times, Guardian and The Daily Mail and we will report back with further updates on this important topic.

Supporter Events in 2018

Oracle Annual Golf Day, Thursday 27th September 2018, New MaldenOur fun golf day is back, and this year will be held on Thursday 27th September 2018 at Malden Golf Club in Surrey. Fourball teams and individuals welcome of all standards, Fourball £480, individuals £120. We are delighted that comedian Aaron James will once again be entertaining us after lunch.

15th “Shark Attack” Golf Day, Friday 3rd August 2018, Royal Wootton BassettThis popular event returns to The Wiltshire Golf and Country Club in Wootton Bassett. Fourball teams and individuals welcome. 1pm shotgun start, three course dinner with entertainment plus fabulous raffle and auction. Great value at £65 per player. Overnight accommodation available for £65 for a double room with breakfast at the resort. Contact organiser John Hughes at www.sharkattackcharitygolf.com for further information.

4th Annual Supporters Research Evening, Tuesday 9th October, LondonWith the generous support of Grange Hotels, we will once again be holding our free annual supporters event at Grange City Hotel, Coopers Row, London EC3 on Tuesday 9th October from 6.30pm. Hear from research leaders and meet the teams behind our pioneering scientific research projects. Oracle is now funding more projects than ever before thanks to our supporters and this evening is a showcase of just a few of them. A buffet and drinks will be served during the evening.

Pre-registration essential at oraclecancertrust.org/events, [email protected] or call us on 020 7922 7924. Numbers are limited so please do apply early.

13th Annual “Glory of Christmas Concert” Monday 3rd December, LondonThe highlight of our year is our much-loved “Glory of Christmas” Concert being held at the concert hall, St John’s, Smith Square in London SW1. Featuring rousing classical music from The Thames Chamber Orchestra, celebrity readings and carols, supporters, patients and staff from hospitals come together and celebrate the beginning of the Christmas season.

Ticket prices range from £10-£45 and are available direct from the Box Office at St John’s, Smith Square at www.sjss.org.uk or by calling 020 7222 1061.


Fundraising

Oracle beneficiary charity for UK-wide LABC Awards Series in 2018Oracle is thrilled to have been chosen as this year’s chosen charity for Local Authority Building Control (LABC). LABC represents all local authority building control teams in England and Wales. The group’s network of 3,000 professional surveyors provides advice and services to home and property owners, architects, plan drawers, developers, building contractors and other professionals to ensure buildings are safe, healthy and efficient to meet standards set by the building regulations.

Each year, the LABC President selects a charity to support with fundraising at LABC’s Regional and National Awards nights and with other one-off events and initiatives. This year’s LABC President is Chris Griffith-Jones, Head of Building Control at Winchester City Council. Head and neck cancer is a very personal cause to Chris.

Says Chris:

Fundraising so farAnd LABC’s fundraising has got off to a fantastic start! So far, Oracle has benefitted from seven Award Nights across the UK in Leicester, Plymouth, Manchester, London, Milton Keynes, North and South Wales. Guests have heard from Oracle representatives, Volunteer Research Committee member, Dr John Glaholm and Emma Colliver about the devastating impact of head and neck cancer and have put their hands in their pockets to donate and bid on silent auction lots to raise funds for Oracle’s vital research.

Elsewhere, other LABC members have donated to the fundraising campaign with Conference fundraising, Christmas Cards sales and by signing up to Chris’s £100 Challenge. Other events coming up also include an 100 mile bike ride, quiz night and even a head shave!

Thanks to their efforts, LABC members have already raised over £25,000 for Oracle’s work with events still to come across the country.

A huge thank you to Chris and the whole LABC team for their generous support. We’re looking forward to the events to come!

www.justgiving.com/fundraising/labc-president4

Oracle attends prestigious WealthBriefing Awards raising over £5,000Oracle was delighted to be chosen as the beneficiary charity for the 2018 WealthBriefing Awards at London’s Guildhall. The evening, which was hosted by Sky TV’s morning news anchor Sarah-Jane Mee attracted over 400 guests from the worlds of finance and banking, presenting more than 45 awards during the course of the evening.

Leading City financier and Oracle Trustee Keith Jones (left) opened the evening with a short presentation about head and neck cancer and Oracle’s vital research work. We are grateful to the WealthBriefing Team and Clearview Publishing for their continued support of our Charity’s work.

Keith Jones with Sarah Bender and Emma Colliver

Keith Jones is presented with the cheque by the host, Sky News presenter Sarah-Jane Mee

Dr John Glaholm presents to the audience in Plymouth

LABC President Chris Griffith-Jones (centre) with his family

When I heard about Oracle Cancer Trust, it seemed that someone had designed a charity for me. Tragically in two short years, I lost my sister to thyroid cancer and

my father to salivary gland cancer. The devastation of their diagnoses and treatment affected my mother greatly and she sadly passed away last year. The aim for my

Presidential Year is to raise as much money as possible to fund research and raise the profile of Oracle and its fight against one of the most physically debilitating

forms of cancer.


Supporter Fundraising

To mark the 10-year anniversary of his own throat cancer diagnosis, supporter Ben took on the iconic Baja Mexcican 1000 off-road challenge to raise funds for Oracle’s research.

Ben tells his story:“I was diagnosed with Stage 3 Throat Cancer in 2008. The tumour was the size of an orange and I needed immediate surgery. I went into St Barts and had a split mandibular resection with a radial forearm flap, followed by a course of chemo-radiotherapy. It’s a long road to recovery after such radical treatment and there were many tough times along the way which I was only able to get through because of my immense good fortune to have an incredibly supportive family and wider circle of friends who were all amazing.

“One of the toughest things was not being able to eat or drink after the treatment for about a year. Eventually I was lucky enough to hear about a pioneering treatment being piloted in Florida by Michael Crary and Giselle Mann called the McNeil Dysphagia Therapy program. I took myself overt there and with in weeks was well on the way to nearly normal eating.

“As the ten year anniversary of my diagnosis approached, I wanted to take on a big challenge both to stretch myself and also to raise money for Oracle Cancer Trust to help with their research. Before I was ill I raced dirt bikes in the UK and also on African Rallies but it had been a long time and physically I was much less strong with some neck strength issues as a result of the radical surgery I’ve had.

“I decided to enter the Baja Mexican 1000. A 1350 mile off-road race down the Baja peninsular through deserts, over mountains and through cactus forests from Ensenada to San Jose del Cabo in the South. It gave me a great focus to get fit, to challenge myself and also a great story to hang some fundraising on. The race itself was really tough….long days in 40 degree heat racing in the dirt at speeds of up to 100mph but in the end I made it and finished first in the over 50’s class and second overall. I’m so incredibly grateful to the doctors and nurses, the surgeons, oncologists and therapists who got me through and out to the other side. The treatment I had was amazing and a lot of it was down to the research that came before. I decided to support Oracle because I felt that helping a small, highly research-focussed charity would give more impact for fundraising efforts of one person. So far we’ve raised almost double our original goal and we’re still going.” The team would like to thank Ben for taking on his challenge in support of Oracle’s work.

Bike enthusiast Ben Schuckburgh raises £10,000 for Oracle

Angie Bryant’s Spring Ball raises over £6,000Angie Bryant’s annual Charity Spring Ball was attended by over 185 guests at The Windmill Bar and Restaurant near Burford in Oxfordshire in April. This year’s ball raised £6,400 bringing Angie’s total raised to over £40,000 supporting head and neck cancer research over the past seven years.

Friends and family of Angie enjoyed live entertainment throughout the evening and fundraising included a draw of over 30 donated prizes, including a luxury villa in Spain.

Angie has been a devoted supporter following her diagnosis of tonsillar cancer in June 2010. This diagnosis resulted in a 14.5hr operation before undergoing months of radiotherapy and chemotherapy. Angie has been actively fundraising since 2011 and has abseiled down The John Radcliffe Hospital, cycled from Oxfordshire to Paris, cycled the iconic RideLondon 100 event as well as organising her annual Spring Ball.

Angie with Oracle’s Voluntary CEO Jamie Newall

The stunning party venue in Oxfordshire

Ben Schuckburgh takes part in one of the world’s toughest races

(left) Ben Shuckburgh

“I will never taken for granted how lucky I am to have survived this cancer and feel compelled to give back. I was absolutely thrilled that

Oracle’s Voluntary CEO, Jamie Newall joined us with his family and accepted the cheque on behalf of the charity. None of this would have been

possible without the continued support of my wonderful family and friends”


Julian’s Journey Julian’s Journey Fundraising Campaign

In our last edition of Speak Out, Oracle supporter Julian Gilbert told us about his throat cancer treatment and his year-long Julian’s Journey fundraising campaign set up to raise vital funds for Oracle. In April 2018, the Julian’s Journey team took on their next event - the Brighton Marathon. Four of Julian’s friends took on the 26.2 mile course, raising over £10,000 for Oracle. One of the runners Ian, who had previously never run a marathon, writes about the trials and tributions of training for the big day.

“I’ll start by saying that I am not a runner. Well I certainly wasn’t before this, and I’d still not consider myself one, but I have done it – I’ve run a marathon. And more importantly, I managed to raise a good sum of money for Oracle whilst putting myself through the pain. So how did this happen?

“Take yourself back to last summer. Sat in a pub after a nice evening walk and one of my cycling friends Pat shared a message to our WhatsApp group. Julian, a mutual friend, was looking to raise some money for a charity called Oracle after his own treatment for throat cancer. Pat had decided that he was going to run the Brighton Marathon. By this point, he had persuaded two to join him. Ammon – the running, cycling, swimming machine - and Stuart. I was tempted, but really…! I had been doing Park Runs and had run 10 miles once – it had nearly killed me. Running a marathon really wasn’t on my bucket list, but having been enjoying the shorter runs, a fairly small amount of peer pressure saw me spend the nearly £70 on entering. “What have I done…?” But it was nearly 10 months away…

“The summer came and went with some gentle running, but most of the exercise was out on the bike. A 10k run in October went well, despite a niggle in my glutes. Running was my exercise of choice now! October saw a total of 37kms, November and December were about 65kms each. It was the start of 2018 and there was a long way to go.

“January was better. I had some treatment on my calves (thanks Anna) and that seemed to help. 106 kms were run, and that included my first proper half marathon distance run. Whilst I was tired at the end, I ran the whole way. Good news.

“By this point, the fundraising site was set up, but with the injuries, I was hesitant to commit. Was I even going to be able to do this? The end of February came, with a lack of long runs, and various aches and pains. I was well off plan!

“The turning point was receiving advice from a triathlete friend who suggested some physio. With it, things started to improve. It turns out a few little stretches really isn’t enough when you are punishing your body. So a new regime was in place, and March was going to be key. I was committed now.

“March saw me run 176kms – more than twice the previous month – and I was feeling more confident. By the end of the month the tapering had started and the fundraising was going well. I am lucky to have such great

friends and colleagues, as well as to be working in a relatively small industry where people are happy to support someone doing something crazy!

“So along came Race Day – a bit warmer than hoped, and with the crowds out in force. With my Oracle vest on, I headed to Preston Park. And then I was off.

““You’re going too quick!” was the call when I twice went past my partner early in the run. Yes, I was, but it was the most comfortable pace. The Brighton Marathon course is hilly. Some are necessary, but some just seem to have been put in to hurt the runners. Ah well – we’re crazy to do the run, so I guess we deserve it.

“During the first half, we all seemed to be having quicker runs than in practices. Maybe this bodes well! Half way came and went. My legs were starting to tire but were still moving.

“I got to nearly 32km (nearly 20 miles) and was still at a reasonable pace. It was the quickest I had run that far, but then I hit the ‘dead zone’. But I pushed through.

“Finally - despite a turn of bad weather, the end was in sight. I missed my partner on the home straight as I was so pleased to see the finish line and could not take my eyes off it. My official race time was confirmed at 4:20:39. I was tired, cold and emotional but the joy of having completed the race took over. I had done it.”

“Most importantly, I am so pleased to have been able to support Oracle. I would like to thank the other runners (well done guys!) and Julian for setting up his campaign and for galvanising such a great group of people for such a worthy cause. And finally Kirsty- thanks for your support over the past six months and putting up with my grumpiness when I was struggling with injuries. Your turn next!”

We are very grateful to Ian for sharing his story - the £10,000 raised from the Brighton Marathon has brought the total raised for Julian’s Journey to over £40,000. Julian has pledged his funding to PhD student Alexandra Rose who is investigating new treatment options for ACC of the salviary glands and that Julian’s fundraising has already raised enough to cover an entire year’s work.

Julian’s Journey supporters take on the Brighton Marathon

Ian, Chris, Ammon and Stu in their Oracle running vests


Supporter Fundraising

Oracle is privileged to have had not one but three runners taking on the world-famous London Marathon in aid of the charity in 2018. And as if 26.2 miles of running weren’t enough in itself, this year’s event was the hottest London Marathon on record with temperatures rising as high as 23C.

Supporter Simon Jelfs (pictured top left) flew all the way in from Tokyo to take on the challenge after training during the coldest winter in 50 years in the Japanese capital. Having run the Tokyo Marathon four times, Simon is a seasoned runner and was fortunate enough to win a place to run the London Marathon for the first time in 2018. Simon’s mother has been having immunotherapy treatment at The Royal Marsden over the last two years, making Oracle a cause close to his heart.

Supporter Ammon (pictured left) is also no stranger to marathon running- and even to ultra-marathon running! Running in aid of Oracle and in support of the Julian’s Journey Fundraising Campaign for the charity, Ammon managed to finish the race in close to 3 hours despite the soaring temperatures. Ammon had also taken on the Brighton Marathon in aid of Oracle just one week earlier.

Supporter Charlie (pictured left) also ran this year’s event following his own family experience of throat cancer, and recognising the important part that research has to play in developing effective treatments for cancer patients.

Says Charlie, “As a first time runner it was a very tough (and hot!) experience but one I’m extremely happy to have pushed through for such a great cause in Oracle.”

Feeling the heat - Oracle supporters run the hottest London Marathon EVER

“Last year, a close friend of mine tragically lost her mother to cancer. Eager to do her bit in the wake of her loss, my friend managed to convince me to take on a ‘simple’ triathlon with her in aid of cancer research. Eager to broaden my supporting horizons and passionate about supporting cancer charities after my own family’s experiences of the disease, I was keen to support the Tri Hard’s Challenge.

“Little did I realise what was in store for me when, just a few months later in April 2018, I found myself taking on what turned out to be a half-Iron-Man-style adventure on bike, boat and foot.

“Planned and organised by my friend Lucy and her wonderful family, the challenge saw 20 amateur athletes cycle 130km from The Royal Marsden Hospital in London to Hayling Island, followed by a 2-hour row and an 18 km run around the Isle of Wight.

“Having set off at the crack of dawn on a quiet Saturday in London, our team completed their challenge by the time the sun set on the Isle of Wight. Thankfully, only minor puncture-related and fog-related obstacles troubled our team along the way.

“I managed to raise a total of just over £2,700 for Oracle Cancer Trust through my individual fundraising page, but overall our team of 20 athletes managed to raise a grand total of over £30,000 for a combination of cancer charities, including The Royal Marsden and Macmillan.“

Chloe Colliver

Chloe takes on Iron-Man style fundraising challenge

Our three Oracle Marathon runners raised over £5,000 for Oracle’s cancer research, more than enough to fund an entire year of tuition fees for one of Oracle’s six PhD

student scientists as they take their first steps into careers in cancer research.

Chloe and team Tri-Hard


Supporter Fundraising Research Projects Update

Supporter Philip Johnson shares his story of survival with patients“In May I was asked to share “my story” with a small group of head and neck cancer patients at a health and wellbeing event, “Facing Forwards”, which was organised by the head and neck unit at Southampton General Hospital. Most of the six patients were three months post-treatment, with two having undergone total laryngectomies (removal of the voicebox).

“I related my story about being diagnosed with throat cancer in 1997 and my treatment journey over two years that included radiotherapy, five major operations including a laryngectomy. I was not expected to survive on at least two occasions, but did so thanks to the marvellous Peter Rhys Evans and the NHS team at The Royal Marsden Hospital.

“The patients were interested in how I coped with various parts of my treatment and how I learnt to manage; my low energy levels, eating and swallowing problems and adapting speaking through my voice prosthesis. I spoke about not being able to return to work full time but that, as well as leading a fairly normal family life, I learnt to make the best of what I could do, e.g. voluntary work (active member of the Patient & Carer group in the Faculty of Health Sciences, University of Southampton) and social golf … albeit only 9 holes! At the end of the presentation I handed out copies of the one page article I had produced for the “Speak Out” newsletter in Autumn/Winter 2015, together with the Oracle Cancer Trust leaflet, see photo.

“Throughout the year I support Oracle by donating my fee for undertaking project work for the University of Southampton and am proud to support the charity.”

Megan and her partner raise over £2,000 in memory of her father

“Jason and I set out to complete the Blenheim 7k Fun Run on Sunday 29th April in memory of my late father who died of nasopharyngeal cancer on the 5th September 2017. We only trained for around 3 weeks but ran every other day during this period. “We set up a Just Giving page to raise money for OCT and set ourselves a target of £300 and gradually increased it as time went by. To date, we have raised £1742.50 plus £286.88 in Gift Aid bringing a total raised of £2,029.38!! We finished on a high when we were greeted by friends and family. We came 863rd & 866th out of 1,808 people which is a fantastic achievement for both of us. Due to our new found love of running, we have decided to run a local 10k and then the Oxford half marathon in October this year.”

Other fundraising news

Walking in memory of Sian’s Aunt, Dionne Arrowsmith

Many congratulations and thanks to Sian Lewis who undertook to walk The Three Lochs Way in memory of her late aunt, Dionne Arrowsmith. The 34 mile walk spans three lochs in South West Scotland including Loch Lomond, The Gartloch and Loch Long. Although the walk can be done over several days, Sian elected to complete it in one go and in so doing, raised more than £1,400 for Oracle. We are enormously proud and grateful to have been chosen as the beneficiary charity.

Three Challenges for Three Charities - Giles Cuthbert

“On April 22nd I took part in the first of three challenges for three charities with the aim of raising least £2,500 for each.The first is the London Marathon for Parkinson’s UK, the second the RideLondon–100 mile bike ride for Diabetes UK, and the third is Swim Serpentine – a 2 mile swim for Oracle Cancer Trust. Each of these charities I hold very dear to my heart.

“Head and neck cancer is a particularly personal cause. In January 2016, I was diagnosed with head and neck cancer and in March I started an intense course of chemo- and radiotherapy. I had already booked in to ride from London to Paris at the beginning of July. I set this challenge as my personal goal whatever the outcome. This would be the closure of this episode.

“My treatment finished late April and I started training for the ride, it was going to be tough as I had lost up to 3 stone over two months of treatment. A week before we set off on the ride my results were in and I was given the result of total conclusion- It had all gone! I had been given a second chance.

“Undertaking the London to Paris ride, and my three 2018 challenges is my way of saying thank you to the fantastic staff at The Churchill for all you have done for me. You are all fantastic. We will find a cure; keep striving, believing and it will happen.”

To sponsor Giles’ Swim Serpentine challenge for Oracle visit https://www.justgiving.com/fundraising/Giles-Cuthbert7


Research Projects Update

Harnessing the immune system to tackle hard-to-treat thyroid cancers

Oracle has been a prolific funder of thyroid cancer and since 2012, has funded a team led by Dr Malin Pedersen at The ICR. This has only been made possible thanks to the support of our funders and has been instrumental in the team gaining mainstream funding from CRUK.

Like many head and head cancers, thyroid cancer is one of the fastest growing cancer types and over 3,500 patients are diagnosed with the disease ever year.1

Thyroid cancer is a rare type of cancer that affects the thyroid gland, a small gland at the base of the neck that produces hormones. It is most common in people in their 30s and those over the age of 60. Women are two to three times more likely to develop thyroid cancer than men.2

Thyroid cancer is usually treatable and in many cases can be cured completely, although it can sometimes come back after treatment.

Sadly, there are a number of highly aggressive (and frequently lethal) subtypes of thyroid cancer including: radioiodide-refractory differentiated thyroid cancers (RAI-R DTC), poorly differentiated thyroid cancers (PDTC) and anaplastic thyroid cancers (ATC). Sadly for these patients, there are few available effective treatment options.

Determined to address this urgent need, Professor Harrington’s lab at The Institute of Cancer Research in London is exploring new potential treatment options for these patients, focusing their efforts on testing new immune-based therapies.

Immunotherapies harness the specificity and power of the body’s own immune system to target and destroy cancer cells. Identifying which molecules and cells in the immune system are best to target is a key area of novel cancer research.

1 Source Cancer Research UK statistics (2014)2 Source https://www.nhs.uk/conditions/thyroid-cancer/

It is already known that radiotherapy, which is a key part of standard-of-care treatment for head and neck cancers, can help to trigger an immune response to cancer in the body. The exact mechanisms behind this are poorly understood.

Recent evidence has indicated that radiation triggers activation of a particular cascade of molecular events in the body known as the cGAS-STING pathway which leads to a potent anti-tumour immune response.

In thyroid cancer, radiotherapy is not commonly used and therefore of less clinical relevance. However, thanks to new funding committed by Oracle, Professor Harrington’s team will be investigating the use of new anti-cancer drugs being

developed to directly activate STING (referred to as STING agonists). This direct drug activation of STING may be a novel approach for treating previously untreatable thyroid cancer, and capable of mimicking the same anti-tumour response triggered by radiotherapy in other head and neck cancers.


Cases of thyroid cancer are on the increase

Lead Researcher Dr Malin Pedersen

Thanks to the generosity of our supporters, we are now funding more projects than ever before, and currently have 16 research projects running in the UK at some of the UK’s leading scientific research institutions.

Meet the research leaders and their teams at our fourth Annual Research Event on Tuesday 9th October 2018 from 6.30pm at The Grange City Hotel, London, EC3.

Register on line at oraclecancertrust.org/eventsEmail [email protected] us on 020 7922 7924



Researching the impact of radiotherapy on taste

Following pioneering research into the impact of radiotherapy on dry mouth and swallowing function, Oracle has just agreed to fund new research led by Honorary Trustee and leading oncologist Professor Chris Nutting (pictured) into the impact of radiotherapy on taste.

Dr Lucinda Gunn will be leading the research for this two-year project at The Royal Marsden Hospital in London.

Up to 75% of patients undergoing radiotherapy for their head and neck cancer report taste dysfunction. Some patients lose their sense of taste – either partially or wholly – but others merely report a changing perception of taste.

There are five types of taste – salt, sweet, bitter, sour and the lesser known umami. It has been described as savory, and characteristic of broths and cooked meats.

People taste umami through taste receptors that typically respond to glutamate, which is widely present in meat broths and fermented products and commonly added to some foods in the form of monosodium glutamate (MSG).

Since umami has its own receptors rather than arising out of a combination of the traditionally recognised taste receptors, scientists now consider umami to be a distinct taste.

Taste receptor cells for each type of taste collectively form taste buds and pores which vary in density across the tongue, oropharynx and larynx.

Radiotherapy has a direct toxic effect on taste buds located in areas receiving doses of radiation which is thought to be the predominant mechanism for taste dysfunction in head and neck cancer patients.

Professor Nutting and Dr Lucinda Gunn will be using patient data from previous clinical trials to investigate the relationship between the dose of radiotherapy given to a patient and a patient’s ability to taste after treatment.

After this, the pair will be setting up a new trial to test their theories about the dose-dependent relationship between radiotherapy and taste dysfunction, and to investigate the recovery of taste following radiotherapy.

The will also use novel experimental techniques to probe the impact of radiotherapy on the density of different types of taste bud.

Having demonstrated any dose-dependence relationship the pair would then aim to test different approaches to delivering radiotherapy to best preserve taste function for patients in both the short and long term.

Oracle is grateful for the support of The Adrian Swire Charitable Trust and The Swire Charitable Trust for their support of this project.

Meet Professor Nutting and Dr Lucinda Gunn at our Annual Research Evening on Tuesday 9th October 2018 - do book early as spaces are limited at oraclecancertrust.org/events.

Taste and radiotherapy

Â Taste dysfunction is one of the most frequent complaints of patients undergoing radiotherapy for head and neck and is reported in up to 75% of patients

Â Alongside dry mouth and swallowing difficulties, taste dysfunction plays a major role in anorexia, weight loss and malnutrition of patients

Â Taste dysfunction has a negative impact on quality of life (QOL) following head and neck radiotherapy

Â The study aims to give insight into the mechanisms of injury leading to taste dysfunction following radiotherapy

Â It is hoped that the research will serve as a platform for further research to optimise the technical delivery of radiation




Developing a molecular test for metastasis

Oracle has pledged funding to a new PhD research project into mouth cancer at The Blizard Institute which is situated at Queen Mary’s University (QMU) and Barts NHS Trust in London.

The Blizard Institute is the largest Institute of Barts and the London School of Medicine and Dentistry and aims to deliver excellence in all aspects of research, teaching and clinical service.

The origins of this state-of-the-art centre for research and education began at the dawn of the 21st century when the case for a new facility for the School of Medicine and Dentistry at Whitechapel was approved. A total amount of £45 million was invested in the project which took just under five years to reach fruition.

The building was designed by leading architect Will Alsop in partnership with Amec. The 9000m2 provides world-class teaching and research facilities including open-plan laboratories, office space and the 400-seat Perrin lecture theatre.

Also housed within the building is a public ‘understanding of science facility’; the “Centre of the Cell”. This interactive education centre is aimed at children in the local community who are encouraged to develop an interest in science and research.

This is the first project Oracle are funding at QMU/Barts and we are looking forward to working with the team of Professor Iain McKenzie, Professor of Stem Cell Science at Queen Mary’s University, and Dr Adrian Biddle (pictured top right), a Stem Cell Research Fellow at the University.

Professor McKenzie and Dr Biddle are collaborating on a groundbreaking new research project to answer this very question.

Mouth cancer is one of the ten most common cancers worldwide, with over 300,000 cases diagnosed every year. What’s more, mouth cancer incidence is increasing globally and in the UK. 1

Around 30% of mouth cancer patients present once their cancer has spread to their lymph nodes.2 This spread is considered the single most important predictor of outcome. However, it is currently very difficult to predict which tumours will develop these metastases.

The purpose of this first of its kind project will be to try and develop a test for metastatic cancer stem cells – types of cells which are thought to have the ability to differentiate into diverse cancer cells as well as contributing to cancer spread.

If such a test can be developed and validated in a retrospec-tive analysis of human tumour specimens, it could potentially be used to discriminate between cancer tumours which are and are not likely to spread, helping to identify the most high-risk patients.

PhD StudentStudent Leah Palmer will be starting her three-year PhD in July this year and we are looking forward to updating readers with her progress in this promising project.

1 Source Stats provided by Dr Biddle and Prof Mackenzie on application2 Source Sano, D., and Myers,

J. N. (2007). Metastasis of squamous cell carcinoma of the oral tongue. Cancer metastasis reviews 26,

645-66


The £45m Blizard Institute at Barts designed by Architects Will Alsop

Stem Cell Research Fellow, Dr Adrian Biddle



Oracle invests in Robotic SurgeryWhilst many oropharyngeal patients are successfully treated with chemotherapy or radiotherapy, for patients with a cancer of unknown primary (CUP), the large amounts of radiation required to eradicate potentially cancerous sites can result in severe and long-term side-effects.

This presents clinicians with a choice – whether to continue with the chemoradiotherapy or whether to return to the more traditional approach of primary surgery for these tumours.

Increasingly, clinicians are taking an interest in using robotic surgery to treat head and neck cancer. State-of-the-art surgical techniques offer the promise of being precise and minimally invasive to patients. What’s more for these cancers of unknown primary, a technique known as robotic tongue mucosectomy (RTM) has been developed to help enable a fuller assessment of where the primary cancer may be residing.

Oracle has pledged new funding to an exciting study into the use of (RTM) in combination with a technique known as step serial sectioning (SSS), an approach to taking very thin slices of biopsied tissue to improve the chances of finding microscopic cancers.

This project involves working with three other hospitals in the UK; The Royal Marsden Hospital, Oxford University Hospitals and Newcastle upon Tyne Hospitals and will be carried out under the leadership of renowned head and neck surgeon Professor Vinidh Paleri (pictured) at The Royal Marsden Hospital.

SSS could play in the treatment of HPV positive head and neck cancer patients whose cancer has metastasized from an unknown site.

The aim of this study will be to identify what role RTM and it is hoped that the promise of being able to better detect the primary cancers in these patients could alleviate the anxiety involved for these patients when their primary cancer is not found. Being able to more concretely eliminate the presence of cancers on one side of the neck could also reduce the amount of treatment a patient with a cancer of unknown primary needs to undergo.

Oracle is grateful to The Adrian Swire Charitable Trust for their support on this pioneering project work.

Preserving swallowing function after head and neck cancerJust under half of all head and neck cancer patients are left with swallowing difficulties for a year after treatment – a side-effect which is often debilitating and damaging to quality of life. It is therefore of clinical interest to understand how to best reduce this side-effect, without impacting on patient sur-vival outcomes.

Oracle is proud to have funded two years of pioneering research by Royal Marsden Hospital Clinical Fellow Imran Petkar into the impact of head and neck cancer treatments on swallowing function.

Study highlightsUsing a new technique called Swallow-sparing intensity-modulated radiotherapy (SW-IMRT), the dose of radiotherapy delivered to the muscles involved in swallowing – the PCM – was reduced compared to standard IMRT. This resulted in a 7% reduction in the risk of developing persistent swallowing difficulties after radiotherapy. The definitive role of SW-IMRT is now being investigated in a Cancer Research UK funded national clinical trial. One of the limitations with IMRT is that when the radiation beam enters the body, a portion of the beams will continue travelling through to the other side, potentially damaging normal tissue. By contrast, proton beam therapy is associated with no exit dose. This provides a motive for investigating the role of swallow-sparing proton beam therapy (SW-IMPT) in reducing swallowing toxicities. Results of an initial study have proven positive, and Dr Petkar has now approached Cancer Research UK with a proposal for a Phase III Clinical Trial into the use of SW-IMPT in throat cancer patients.

Dr Petkar’s studies showed that significant variation currently exists in the radiotherapy practice for nasopharynx cancer patients in the UK. This provides a motive for a consensus on the optimal curative, function-sparing treatment for these patients.

Oracle would like to thank The Adrian Swire Charitable Trust and The Swire Charitable Trust for their contribution towards this project work.


Research Projects Update Research Projects Update

Developing a pioneering blood test to detect HPV

Last year, Oracle awarded funding to a pioneering HPV-related head and neck cancer project at The ICR under the supervision of renowned oncologist Dr Shree Bhide. Scientist Dr Jen Lee (pictured) will be undertaking the study. We are also delighted to confirm that Oracle has recently committed a further nine months funding for this study.

HPV and Head and Neck CancerAccording to recent statistics, about 70% of head and neck cancers are now associated with HPV – the human papillomavirus.1 What’s more, incidence of HPV+ head and neck cancers is increasing at an alarming rate- doubling in the UK, US and Northern Europe over recent decades and often occurring in younger patients.2

This gives a clear motive for investing into research into HPV in head and neck cancer.

Oracle’s HPV projectFor their Oracle funded project, Dr Bhide and postdoctoral scientist Dr Jen Lee (pictured) were aiming to develop a test to detect HPV DNA circulating in the blood. Detecting HPV in the blood could provide a way for doctors to test for any residual HPV+ cancer or to track a cancer’s response to treatment.

Thanks to Oracle funding, Dr Bhide and Dr Lee were able to develop an ‘HPV-detect’ test which detected HPV DNA with a sensitivity and specificity of >90% prior to treatment and with 100% accuracy after treatment.

Results of their pioneering work were published in a highly acclaimed international journal and have created great excitement in the cancer research community.

What’s next for HPV-detect? Oracle has now chosen to approve new funding to Dr Bhide and his colleagues to further develop and test their HPV-detect assay. Studies have shown that HPV+ patients often tend to do better with their cancer treatments than HPV- patients. Now, various UK clinical trials are looking at whether the dose of radiotherapy or chemotherapy given to an HPV+ cancer patient can be reduced compared to an HPV- cancer patient to reduce treatment side-effects.

Dr Bhide and Dr Lee hope to use their HPV-detect test in some of these pioneering clinical trials, to analyse the samples collected from patients undergoing different treatment regimes to test for the presence or absence of HPV.

1 Source: https://www.cancer.gov/about-cancer/causes-prevention/risk/infectious-agents/hpv-fact-sheet

2 Source: Research proposal collated by Dr Shree Bhide


Oracle Cancer Trust, 32-36 Loman Street, London SE1 0EH

Telephone: 020 7922 7924 [email protected] charity 1142037 Leading research into head and neck cancer

Fundraise

From taking part in cycle rides and marathons to hosting quiz nights or bake sales, there are lots of fun ways to raise money with friends, family and work colleagues to support our work. Oracle receives no government funding and relies on the generosity of fundraisers to continue our valuable work funding pioneering research projects.

If you have a fundraising idea, do get in touch with us at [email protected] or visit our website where you can download our fundraising guide as well as other useful tips and resources at oraclecancertrust.org/fundraise

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Support our events in 2018

9th Annual Golf Day, Thursday 27th September, Malden Golf Club, SurreyAlways a fun day, our golf day has a change of venue this year and will be held at Malden Golf Club, which is conveniently located just off the A3 near London. A real gem of a club, Malden is a beautiful parkland course with plenty of hazards and challenges for all standards of golfer. Fourball feams £480, individuals £120. Entertainment by Aaron James.

Annual Research Event, Tuesday 9th October, Grange City Hotel, LondonA free evening event for all supporters to come and hear from research leaders and their teams about the latest research developments from some of Oracle’s 16 funded projects. Kindly sponsored by Grange Hotels, refreshments and a buffet are served. Places are strictly limited, please do apply early at oraclecancertrust.org.events by email [email protected] or by calling us on 020 7922 7924.

13th Glory of Christmas Concert, Monday 3rd December, St John’s Smith SquareOur much-loved Christmas celebration returns with music by The Thames Chamber Orchestra, carols and readings. We are delighted to announce that our new Patron, Sir Michael Morpurgo will be reading at the event. Tickets are available from mid-July from the Box Office at www.sjss.org.uk or by calling 020 7222 1061.

For further information please email us at [email protected]

OnlineYou can now make a one-off donation or set up a regular donation directly via our website at oraclecancertrust.org/donate

Regular Giving - Become an Oracle FriendBy becoming a regular donor you can help ensure that Oracle’s research programmes get the funding they need to make advances in finding newer and kinder treatments for head and neck cancer. A direct debit form can be downloaded via Oracle’s website at oraclecancertrust.org/friends

Become a Corporate PartnerOracle is looking to create mutually beneficial partnerships with companies who would like to support our pioneering cancer research work, a cause about which everyone can feel passionate. Pledge to fundraise for the charity and in return we would look to offer you bespoke fundraising support, volunteering opportunities and events invitations. We will work with your organisation to offer dedicated support throughout any partnership activity and to keep you up to date with the charity’s pioneering research work so that you can understand the impact of your fundraising.

Contact [email protected] for more information or visit oraclecancertrust.org/fundraise/become-a-corporate-partner

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