Issue 22 | FeB 2016

A NeW GeNeRATION OF LIFesAVeRs

25 mILLION ReAsONs TO sAy ThANk yOu AT Wmdd

BIOINFORmATICs – WhAT’s IT ALL ABOuT?

heRO dAy IN ALL ITs GLORy

The AnThony nolAn newsleTTer for sTAff And volunTeers

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If you would like to contribute to future issues of INSIGHT, get in touch with: internalcomms@anthonynolan.org

Cover image: Potential donor Lloyd Ellis - see opposite page.

WeLCOme TO INSIGHT

welcome To InsIghT 22Science and medical research are at the heart of Anthony Nolan’s lifesaving work, and technology is playing an increasingly important role in keeping us at the forefront of the field of stem cell transplantation.

As we celebrate the launch of a new tissue typing method that could significantly improve stem cell transplant outcomes (see opposite), in this edition of Insight we look at the bioinformatics challenge of making sense of the data, and profile another of our SMARTLAB® teams. We also talk to IT Director Rob Gethen Smith about how technology could improve the way everyone at Anthony Nolan works.

Technology gives us the tools, but it’s Anthony Nolan’s people who save and improve lives – whether staff, volunteers, donors or supporters. In this edition we look back at three events that recognised and celebrated our ‘lifesavers’ last year – World Marrow Donor Day, the Anthony Nolan Supporter Awards and Hero Week. And we find out how one week of our Register Development team’s work shows just how many people support us in so many different ways, and get the latest on our efforts to make volunteering at Anthony Nolan even better.

Ian Pithouse editor, Insight

Anya Muir Wood Ella Crumpton Ian Pithouse Jackie Graveney

Lauren O’DonoghueLiz WigelsworthKatie DayMaria Lee-Warren

smRT-eR sequeNCING

InsIghT 22 wAs BroughT To you By

After almost 18 months of development and testing, our SMARTLAB™ is now using Single Molecule Real-Time Sequencing (aka SMRT or Third Generation Sequencing) to type saliva and blood samples. We are the first stem cell registry in the world to introduce this revolutionary technology, which gives us unparalleled detail about a patient and donor’s tissue types, so we can make the best possible matches.

Minister for Life Sciences George Freeman MP visited our SMARTLAB and Research Institute to see SMRT in action. The Minister met Anthony Nolan’s Chief Executive, Henny Braund, and our Scientific Director, Professor Alejandro Madrigal, as well as Dr Katy Latham, Laboratory Director, and Professor Steven Marsh, Director of Bioinformatics and Deputy Director of Research.

George Freeman heard how the highly accurate reads of the patient and donor’s HLA types could allow our researchers to identify currently unknown factors which contribute to the success or failure of a stem cell transplant, as well as improving individuals’ outcomes through better matches.

George Freeman MP said, “Such exciting developments help to reinforce the UK’s position as a world-leader in developing life-enhancing medical technology, and also demonstrate the vital role played by

earlier this month, Anthony nolan launched a new tissue typing method that could significantly improve stem cell transplant outcomes.

charities like Anthony Nolan in helping to deliver this technology to patients.”

Older methods of HLA typing have limitations because they can result in ambiguous tissue types. SMRT sequencing resolves this by examining an entire gene, sequencing different tissues types in isolation.

Dr Katy Latham said: “The implications of this technology could be enormous, allowing for accurate HLA typing in a single experiment and making redundant the need for multiple experiments and cross-referencing of results.

“This is significant as high resolution HLA typing has been shown to significantly improve outcomes when stem cell transplant recipients and their unrelated donors are matched very closely, and could potentially reduce the risk of complications such as graft-versus-host disease.”

As well as improving outcomes, SMRT should be faster than previous techniques, allowing more potential donors to be typed every year, and Anthony Nolan aims to add 100,000 people to the register per year by 2020.

Henny Braund said: “Just as Anthony Nolan was the world’s first stem cell donor registry, it is also the first registry to invest in this pioneering new technology.

“As with everything we do, this investment was driven by a desire to save the lives of more blood cancer and blood disorder patients.

“We are delighted that George Freeman MP was able to join us to mark this important milestone for Anthony Nolan.”

The first group of potential donors to be typed in this way includes 25-year-old Lloyd Ellis, who signed up to the Anthony Nolan register after seeing a friend on Facebook post about the charity.

Lloyd said: “I’m really happy to support the research and proud to be a part of the process to help patients to get better matches.

“It’s pretty amazing to hear I’m one of the first people in the world to be tested in this way. I had no idea so much information could be gathered just from my spit. I hope that this could help me be a successful match for someone in the future; it would be an honour to be in a position to help.”

A NEW GENERATION OF LIFesAVeRsThe launch of our single molecule real-Time sequencing technology (see opposite) marks the start of a new generation of potential donors who have been tissue typed with a level of definition and accuracy which has never before been possible. These donors could offer the ‘best hope yet’ for blood cancer and blood disorder patients in need of stem cell transplants.

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WORld mARROW dONOR dAylast autumn, Anthony nolan celebrated the first ever world marrow donor day with a very special event.

We were delighted to invite stem cell donors and transplant recipients to tea at the Park Plaza Hotel in Victoria, London.

Stem cell registries around the world held events to honour all volunteer unrelated blood stem cell, marrow and cord blood unit donors, and celebrate the global cooperation in blood stem cell transplantation through the World Marrow Donor Association.

World Marrow Donor Day 2015’s theme was ‘25 million thanks’, celebrating the milestone of over 25 million potential donors on international registers. Anthony Nolan’s event included a huge exhibit made up of messages written by transplant recipients, supporters and staff to thank donors for their selflessness.

Our Chief Executive Henny Braund said: “We were delighted to mark the first World Marrow Donor Day and to have the opportunity to thank some of our fantastic donors. It was very moving to hear first-hand from patients on what a stranger’s act of kindness meant to them and their families.”

One transplant recipient – Steve Goddard – had the chance to thank his donor in person on World Marrow Donor Day. Steve, who now volunteers with our Register & Be a Lifesaver (R&Be) programme, met donor Tom Wiltshire for the first time at the event.

Steve said: “Until now, Tom was just a bag of liquid that I watched going into my body – now I can put a face, a person, and a story behind it.

“I’ve been able to express my gratitude as well – I’m just very thankful. He put himself out for a stranger and he had no idea who that person was and for that I am extremely grateful.”

Tom added: “Donating was very simple and easy so it didn’t feel like a big thing but it feels more amazing now that I’ve met Steve. It doesn’t become real until you have met. It is extremely humbling.”

Their moving story captured the attention of the media, and the pair (pictured right) subsequently featured on BBC2’s Victoria Derbyshire show as well as in the Telegraph.

Anthony Nolan has now made a video of their meeting, to demonstrate the difference joining the register makes. Watch the video on our YouTube channel – www.youtube.com/anthonynolan

ANTHONY NOlAN suPPORTeR AWARds

One hundred and forty guests packed into the prestigious Terrace Pavilion room for the awards event. The stunning room featured panoramic glass doors which enabled guests to enjoy an amazing view of the River Thames.

Staff, campaigners, fundraisers, volunteers, MPs and lifesaving stem cell donors got the opportunity to meet each other and share their experiences.

Celebrity guests included The Only Way is Essex’s Bobby Norris, whose mum received a transplant earlier this year, and former EastEnders star Kellie Shirley, who donated her cord blood after giving birth to twins in August.

Awards were presented to remarkable families, volunteers, donors, fundraisers, politicians, clinicians and scientists by our chairman, Simon Dyson MBE.

The Simon Dyson Award for Volunteer of the Year was won by Ryan Tunstall, a transplant recipient who ran the 2014 London Marathon for Anthony Nolan, who has made a huge impact this year as the president of the University of Manchester Marrow Society.

Ryan said: “I am absolutely delighted to receive this award, though it has come as a great surprise. As someone whose life was saved by transplant, it is

heart warming to see so many people supporting this great charity. Thanks to the hard work of all.”

The Shirley Nolan Award for Special Recognition went to Annabella Forbes. Annabella, who has supported Anthony Nolan since 2002 when her sister Millie was diagnosed with leukaemia, said: “It is truly an honour to be nominated for the Shirley Nolan Award. I am incredibly touched and overwhelmed. The campaign was inspired by my big sister Millie so its good work is really because of her not me. This one’s for you Mills!”

Hannah Partos, who was shortlisted for Journalist of the Year, commented: “I had such a great time…It was very humbling to hear about the incredible achievements of different supporters. I really enjoyed myself chatting with new and familiar faces. I hope I can continue to help Anthony Nolan - it’s very exciting to be a small part of a huge collaborative effort helping save people’s lives.”

During the evening tributes were paid to Recruiter of the Year nominee Sue Lloyd-Roberts and to Rob Ireland, both of whom sadly passed away shortly before the awards. Rob Ireland’s daughters Sophie, Georgie and Emma (pictured below) won the award for Recruiter of the Year for their ‘Give Our Dad a Bone (Marrow Transplant)’ appeal.

The Anthony nolan supporter Awards (AnsAs) took place at the house of commons on 17 november. The event was back for its third year to celebrate, recognise and thank many of our outstanding supporters.

The WINNeRs

kian and Luis king Young Hero of the Year

Annabella Forbes Shirley Nolan Award for Special Recognition

Chris spencer Individual Fundraiser of the Year

scotmid Organisational Fundraiser of the Year

Lizzie Parry Journalist of the Year

david Burrowes mP and mark Tami mP Political Supporter of the Year

Rik Basra Leukaemia Campaign BAME Advocate of the Year

dr sergio querol Scientific Supporter of the Year

sophie, Georgie and emma Ireland Recruiter of the Year

Bobby Norris Celebrity Supporter of the Year

Pavlos mastiki Patient Champion of the Year

Jackie horder Clinical Supporter of the Year

stuart Brooks Donor Champion of the Year

helphollie Group Fundraiser of the Year

Ryan Tunstall Simon Dyson Award for Volunteer of the Year

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Q&A WITH ROb GETHEN SmITH

IT director rob gethen smith went on ‘IT safari’ around Anthony nolan when he first started in october 2015, but recently he’s been holed up in a disused meeting room, covering the walls in elaborate diagrams. Insight found out what he’s been up to.

so what is all this about, Rob? It’s part of my role to think about how digital technology can help Anthony Nolan improve what it does and how it does it; how it can help us extend our reach, do more for less, and improve accuracy and quality at the same time.

But before we can do that, we need to take stock of what we have now. We’ve already got information systems and technology that help us do our jobs. But some systems are old and have evolved to the point where they can’t be developed much further, and there may be only one person who actually understands how they work! That’s quite common in the digital age.

For example, SOLAR is a key piece of digital technology that helps us search for lifesaving donors and manage the interaction between people and the laboratory environment. But SOLAR has got old and cranky - we’d like it to do things that it simply can’t do… we’re kind of in a straitjacket.

So what we’re doing now is pausing for a moment and asking ourselves: what is Anthony Nolan here to do; what are we trying to achieve? And what’s the best way of organising our information systems and technology to help us do that, and do it better?

Taking the example of a recent technology challenge, with the introduction of Third Generation Sequencing, there are something like 27 stages from a sample arriving through to the test results. Our scientific applications development team, led by Peter Chenery, have been heavily involved from the start, developing a software system – ‘AN Labs’ – to support every step of that process.

They’ve also had to adapt SOLAR to receive the higher-resolution results that come off the bioinformatics machines, back through AN Labs and into SOLAR.

And that’s just the IT side – each step of the process has a different instrument or robot the Labs teams have had to adopt, and the bioinformatics team have had to create a whole new pipeline – we have just helped a bit by supporting them with the right IT systems.

We’re also trying to get a really clear view of what all our systems across the organisation are currently doing and how they can be made more streamlined and accurate. That’s what these diagrams are all about.

Possibly for the first time, we’ve developed what I call a Digital Technology programme of work. It’s not just a list of IT projects, it’s a list of all the digital and technology projects that are going on across the organisation and the ones we want to do. We’ll use that to prioritise and monitor ongoing projects, and approve new ones that will help us achieve more in the future.

so what does the future hold for Anthony Nolan’s digital and technology? The programme of work is part of a digital and technology strategy I’ve created – again, it’s not an IT strategy, it’s owned by the whole organisation and monitored by our Senior Management Team. It’s in two tiers. The foundation tier, if you like, is the things we just need to do. We’ve got to get them right, and once we’ve got them right, we don’t really want to talk about them any more. This includes things like data backup and security, systems access and performance, and a fully functioning website.

Over and above that is the exciting bit – for me at least. How can we use digital and technology to help us achieve the three aims of our strategy - improve

patient outcomes, be a global leader and make sure we’re an efficient and effective organisation?

On aim one – improving patient outcomes – where digital and technology comes in is improving our interactions with the people who can help us do that - donors, customers, volunteers, supporters, couriers… Technology can really help us to be the number one destination for both transplant centres and potential donors. I think that’s crucial because we are operating in a competitive field; people are increasingly going to have choices about where they go to obtain these services and products, and we need to be the best.

Under aim two, we’re looking at how we can actively lead the global community to improve the way it exchanges its data. I’m leading on a project to further develop Bone Marrow Donors Worldwide. It’s called BMDW 4.0 and will be the global hub for registries, to improve the way that the 70 organisations around the world work together and share donor data. Alongside that is looking for productive partnerships, both within the sector and beyond. For instance, it would be really interesting to team up with someone like Google – after all, they’re pretty good at search!

And there are so many ways technology can help with the third aim, which is all about funding the organisation effectively and using our funds wisely and efficiently. For example, we must automate manual processes. Bits of paper flying around can easily lead to inaccuracy, and we’re already planning to move away from things like paper-based leave forms.

What really excites me is the idea of a digital workforce.

What do you mean by a ‘digital workforce’? It’s about encouraging and enabling people to choose how, when and where they work. And it’s as much about attitude as it as about infrastructure.

One of our organisational behaviours – for me, one of the most important ones – is ‘to take the lead on opportunities to change and improve’. A lot of us, particularly the younger generation, take this attitude with digital technology in their daily lives – they’re always thinking: ‘how can I use this new piece of digital technology, how can I improve how I book my holiday, do my shopping, consume entertainment?’ We’re constantly doing that.

But something happens when we come to work - that seems to stop, and it shouldn’t. We should be constantly questioning how we can do things better, and how digital technology can help us.

Obviously we’ve got a number of barriers to that at the moment – we’re all tied to work in a particular way, prescribed by the systems we have, almost literally tied to our desks! People want to work on a range of interconnected devices around the information they need to use – they can’t or don’t necessarily need to be on their desktop all the time. Whether you’re travelling or working from home, you should be able to get the stuff you need to get done, done, and be just as productive. That’s how I’ve worked for the last five years in other organisations and it’s becoming the norm. In particular I made a point of being ‘paperless’ and achieved this and it was liberating.

We need to work out what a digital workforce looks like for Anthony Nolan, but it’s about creating a far more flexible and connected environment, and giving people the tools and skills to choose how, when and where they work and solve problems together.

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THE SHORT vIEW

Anthony nolan often recruits people on a short-term basis to help with particular projects, and has recently formalised its approach to recruiting interns. working here for a short time often gives people a unique insight into our work.

Insight spoke to Digital Marketing Intern Irene Cantizano and seconded Business Development Manager Catrina Kenny, currently in Finance and Resources, about what they’ve found out.

“I first heard about Anthony Nolan through John Underwood, who has raised over £90,000 for Anthony Nolan by tweeting and blogging about his experiences of lymphoma,” said Irene.

“I joined the register and saw the internship advertised, so I went for it. It’s a really great cause and I wanted to contribute, as well as continuing to develop my skills and understanding of social media.

“A big part of my role has been to interact with Anthony Nolan’s supporters on social media. What’s unique about our relationship with our supporters is how personal it is – our work has such a big, direct impact on people’s lives. For many people it’s literally a matter of life and death; you can’t get more personal than that.

“It’s been very moving hearing about people’s experiences and knowing that, by giving them information, I’m part of the many ways Anthony Nolan helps them.

“I’ve had an amazing experience working at Anthony Nolan – I’ve been made to feel very welcome, and been

socIAl medIA fAcTs• Social media accounts for the

most online sign-ups to the register

• The average person spends two hours 13 minutes every day on social media

• Our most successful posts are informative or feature personal stories

involved in the actual work from the start. I’d just like to say to everyone: you are great, keep up the good work!”

Catrina Kenny is on a civil service development scheme for six months, which includes a series of placements in different government departments as well as the private and public sectors and charities.

“Charities bid for people on the scheme to come on secondment,” Catrina explains.

“Anthony Nolan wanted some support with commercial work and business planning to put the new strategy into practice – and you got me!

“Being involved in the business planning has been really interesting – you can really see what everyone’s working together to achieve. Anthony Nolan has a clear strategy and everyone is on board with it and willing to share information and collaborate. I think the civil service and a lot of other organisations could learn a lot from us!

“There’s always room for improvement, and the business plan is there to put clear milestones and measures of success in place to help us deliver the strategy, so that we can focus on the things that really matter and do more to save and improve lives.”

Staff can find out more about the business plan and the interns policy on the Green Room.

mARROW heROICshero day is an annual celebration that brings Anthony nolan together – an event where magnificent marrow groups, super supporters and splendid staff members dress up in costumes and have tons of fun raising vital funds for our charity.

Our 51 Marrow groups went the extra mile this year and turned Hero Day into a whole week of heroics at the end of November. Students up and down the country put on their masks and capes to come to the rescue of people with blood cancer by recruiting potential lifesavers and raising money for Anthony Nolan. Leeds Marrow had a fantastic result with 172 potential donors signed up to the register in just one session, while a brand new Marrow group at Loughborough University covered their whole campus to sign up 141 students at six different events in one day. Glasgow Marrow took on a week-long commitment to be in their university gym every day, spreading the word about Anthony Nolan and encouraging people to join the register.

Fundraising was not forgotten, with two groups even braving the cold to lend their support - Newcastle Marrow organised an incredible 24-hour sponsored cyclathon, while Brighton and Sussex Marrow held an outdoor bake sale which raised £187.

The groups’ heroic efforts saw a total of 1,890 new potential lifesavers on the register and £4,848 raised to help fund Anthony Nolan’s work.

Keep an eye on the national Marrow Facebook page for more pictures and updates from the heroes at the heart of this campaign: www.facebook.com/ukmarrow

eVeRydAy heROesAnthony Nolan staff got in on the act as well, taking time out from the lifesaving day job to show their superhero sides. We had fundraising fun and games in our Laboratories and offices in London. Our cord blood collectors at King’s College Hospital even managed to take part, selling cakes and biscuits and spreading the word about how expectant mothers can become heroes by donating their cord blood, all while covering the ward.

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PROFILe:clIENT TEAm The client team is one of the smallest teams in our smArTlAB®, but it has a unique insight into the impact of our hlA typing, and how Third generation sequencing (Tgs) will help us save and improve even more lives.

The six-strong team is the main point of contact for Transplant Centres and other customers, dealing with all requests for verification typing to confirm that a potential donor or cord is a match for the person who needs a transplant.

“The Transplant Centre bases its decision of whether to go ahead with a transplant or not on our report, so it’s a lot of responsibility,” says Client Team Supervisor Sharon Vivers. “We have to juggle priorities and manage expectations on both sides.”

The Client team works with all the other teams in the SMARTLAB to make sure this potentially lifesaving typing is done as quickly as possible. Team coordinator Meera logs all the requests – whether for verification typing, 24-hour cords or commercial work – and puts together a list of priorities for the SMARTLAB teams.

The team helps the Labs Management Team deal with any queries or problems with the samples – for example, if they don’t contain sufficient quality or quantities of DNA. It works with the TGS team – or the Services team in the case of urgent samples – to agree what resolution of typing is needed and the

turnaround time. Any further testing on cord samples stored at our Cell Therapy Centre (CTC) in Nottingham is done in the SMARTLAB, and the Client team talks to colleagues in CTC about how urgent the sample is. And the staff are often in contact with the Search team in Operations, who are the other main point of contact for Transplant Centres.

Anila Shah, one of the team’s Principal Clinical Scientists, says juggling priorities and deadlines can be challenging at times, and teamwork and communication are vital. “We’ve recently had a few requests for cords with a five-day turnaround, which is very tight,” says Anila. “But we all help each other out, no matter which team we’re in. We have a really good relationship with the Transplant Centres, so if something’s just not possible within the timescales they request then we can talk to them about it.”

Once the typing results are in, they are checked by two people before being authorised, and the results are compiled in a report. Each report represents a potential donation that could save someone’s life, and sometimes the Client team gets to follow that patient’s journey post-transplant.

‘THE TRANSplANT cENTRE bASES ITS dEcISION Of WHETHER TO GO AHEAd WITH A TRANSplANT OR NOT ON OuR REpORT, SO IT’S A lOT Of RESpONSIbIlITY.’ sharon Vivers

CLIeNT TeAm section head: Vivien Hanson

Principal Clinical scientists: Helen Ogilvie, Anila Shah

supervisor: Sharon Vivers

senior Labs scientist: James Peat

Coordinator: Meera Nanda

One such patient is Sally Veness (above), who has shared her experience of having a stem cell transplant to raise awareness of Anthony Nolan’s work, including speaking at our summer staff briefing. “In a previous role, I actually worked in the lab that provided HLA-selected platelets for Sally pre-transplant,” says Sharon. “And I prepared her verification typing report here in the SMARTLAB when she’d finally found a match. So to see her get up and speak about her experiences and how that transplant saved her life was really moving, and makes my job so worthwhile.”

And the team is excited about the potential of Third Generation Sequencing to help find even more accurate matches for people who need transplants – leading to more lives being saved and improved. “We’ve already done some verification typing through TGS,” says Section Head Vivien Hanson. “Whereas using the old methods we would give the transplant centre a long string of possible alleles, with TGS we get a nice, neat, accurate result for the report. The Transplant Centres have given us great feedback on them, and we’re excited to see how the first patients typed through TGS get on.”

LABs TOuRsThe Client team also coordinate tours so that everyone from new staff to celebrity ambassadors can see the SMARTLAB’s lifesaving work first-hand. Anila Shah coordinates a virtual team of staff from all parts of the Lab to show people around. “We have one or two tours most weeks, and the feedback from attendees is really positive,” says Anila. “The Fundraising team often request tours for their corporate partners and high-profile supporters, and they tell us that one tour led to £26,000

in donations! Seeing our lifesaving work seems to inspire people to do more to support Anthony Nolan. And when patients and donors come on tours it’s often a moving reminder of what a remarkable thing stem cell donation is. When patient and donor Lisa and Neil, who featured in the BBC One documentary The Gift, came on a tour together it was really emotional.”

sharon vivers celebrates hero day with her client team colleauges.

sally veness at the Anthony nolan supporter Awards

Anila shah (second left) with lisa whaymund (left) and neil munro and his family.

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INSIdE THE blAcK bOX: BIOINFORmATICs

our smArTlAB is now using single molecule real-Time (smrT) sequencing to type potential donors to a higher resolution than ever before. But having so much more detail on our donors comes with its own unique challenges.

We’re the first stem cell registry in the world to introduce this revolutionary, lifesaving technology, so we had to develop a whole new automated process to add donors to the register as quickly as possible.

Bioinformatics is about developing methods and software for understanding biological data. A mix of different sciences, bioinformatics combines computer science, statistics, mathematics and biology.

“The bioinformatics is as important to the process as the work in the laboratory,” says James Robinson, Senior Bioinformatics Scientist. “We really can’t do anything without both bioinformatics and the lab process working well together. The way SMRT sequencing works is that it applies a kind of barcode to the DNA itself, then mixes up different samples in one SMRT cell. So we need to make sure our systems know which one’s which before they’re loaded onto the RSII machines, and untangle the results.”

“The machines analyse around 300 sequences in a single SMRT cell, covering up to three genes at once. That’s millions of bits of information, so we had to develop software to identify individual alleles and produce results that make sense to Transplant Centres and the database we use to search for potential donors.”

James says the sheer volume of data was a big part of the challenge for the team – and one that’s facing the entire field of sequencing human DNA, known as genomics.

“Some people are predicting that genomics will soon create more data than websites like YouTube,” says James. “So storage and processing power are becoming big issues. One SMRT Cell of sequencing produces up to ten gigabytes of data. If you consider that a high-end smartphone might have 16 gigs of storage, and we’ll be doing several SMRT Cells in a single run once we’re at full capacity, you get an idea

A WEEK Of ‘mANy WAys’we simply couldn’t perform our lifesaving work without the help of our fantastic supporters, but not all of us get to see how much our supporters do to help us every day.

In 2014 we launched our Many Ways approach, which aimed to better understand what our supporters want; to provide relevant and inspiring opportunities and to communicate in the right way, at the right time, about the things that matter to them.

Just over a year later, we are involved with more people, who are working in more ways than ever before to help us save lives. And nowhere is their impact felt more than in our Register Development work.

Sarah Roulstone, our East and Midlands Regional Register Development Manager, told Insight about the many ways supporters helped to recruit donors, support patients and raise awareness during just one week in her region.

“The week began with a corporate donor recruitment event at Nationwide in Northampton. It was organised by an employee who’d been inspired by a patient appeal - Northampton toddler Joey Ziadi’s search for a donor match.

“A total of 52 donors were recruited, with help from volunteers David Hardwick and Zella Jones. As well as helping at events, David and Zella are regular speakers for our Register & Be A Lifesaver (R&Be) education programme. On the day, they even inspired two of the Nationwide staff to begin training as R&Be speakers!

of how much storage we’ll need. Our system needs to process all that data and turn it into a useful form as quickly as possible. We worked with our IT team to get some really high-powered computers, and had to do some pretty clever stuff to get them to process the information in minutes rather than hours.”

Our bioinformatics is typical of the kind of ground-breaking applied science without which we couldn’t have adopted SMRT sequencing. “Knowing that it works in theory is one thing, getting it to work in practice is quite another,” says James. But unlike some of our other Lab techniques, when it works well bioinformatics is invisible. “We’re like a little black box – data comes off the RSII machines, through our system and pops back out into the Labs IT system, to be analysed and put into Transplant Centres or onto our donor database. But inside the box, there are a lot of very clever things happening very quickly.”

“A few days later, the action moved to Sharnbrook School in Bedford, where R&Be volunteer Shirley Anderson gave her first presentation to an audience of 300 students. Later that day, I presented to 150 Army officers in Beeston, Nottinghamshire. After her talk, 83 officers signed up to the Anthony Nolan register in just one hour.

“Signing up so many donors in such a short period was made possible thanks to help from a team of volunteers - David Hardwick and his wife Jennifer, along with a team of supporters who had previously been involved with an appeal for young patient Zac Forskitt, from Northampton. Also lending a hand were student volunteers from Nottingham Marrow, who are currently trying to set up a new Marrow group at Nottingham Trent University.

“A few days later, I helped out colleague Keith Sudbury, travelling to his area to deliver an R&Be presentation to students at Rushcliffe School in Nottingham. Several days later, R&Be volunteers Jennifer Hardwick and Jet Black returned to Rushcliffe and recruited 49 students to the Anthony Nolan register.

“Driving home for the weekend, I could not help but reflect on how much our supporters do. The week had been a great example of the many ways that our volunteers get involved, how important they are and how we can make things happen when we have their vital support.”

Joey Ziadi with mum Kaisha at the Anthony nolan supporter Awards sarah roulstone

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OuR VOLuNTeeR suRVey: A YEAR ON

suPPORTING OuR VOLuNTeeRs Our volunteers told us… that they feel supported in their role, plan to continue to volunteer for Anthony Nolan and would recommend us as a good place to volunteer.

They also gave us some really useful feedback about how we can improve volunteering at Anthony Nolan and ensure it’s a truly great place to volunteer.

In response… we pulled together a volunteering strategy to set out our plans and priorities for volunteering for the next three years and make certain that volunteers continue to be at the heart of what we do.

Our strategy focuses on three key areas; strengthening our infrastructure, enhancing the volunteer experience and broadening our volunteering opportunities.

LeARNING ANd deVeLOPmeNT Our volunteers told us… there is more we can to do improve our induction for volunteers. Only 68% felt that their induction gave them a good understanding of Anthony Nolan.

In response… over the last few months we have been asking our volunteers what information was most useful to them when they first started at Anthony Nolan, but also what was missing and could be improved.

We will use this feedback to develop and roll out a new induction to Anthony Nolan for all our volunteers.

In november 2014 we asked all our volunteers to complete our uK-wide volunteer survey. we wanted to know what we were doing right, but also where we could do things better. In february 2015 we shared the results with you. A year on, we want to give you an update on how we’ve responded to the feedback.

HAvE YOuR SAY

We would love to hear your thoughts on our progress so far. Are we focusing on the right areas? Is there anything else you would like to see us working on?

If you have any questions or feedback please just get in touch with Liz, our Volunteer Engagement Manager, on volunteering@anthonynolan.org or call 020 7284 8250.

mAkING The mOsT OF OuR VOLuNTeeRs’ suPPORT Our volunteers told us… that they had additional skills they would like to share and are interested in other ways to support our work.

In response… we revamped the ‘volunteer with us’ pages of our website, to provide full details of our current opportunities and make it much clearer where we need support.

We also developed new roles in our labs and research, offering different ways for our existing volunteers to get involved.

sAyING ThANk yOu Our volunteers told us… that they felt recognised for their volunteering and valued by Anthony Nolan. They also gave us some great ideas of different ways we can show our appreciation.

In response… we developed some new ways to recognise our Marrow volunteers. For example, we brought in two additional awards at the Marrow AGM – a Communications award and a Volunteer award to recognise non-committee members.

We also created a Volunteer of the Month award for our non-committee volunteers and revamped our reference certificates to support students with their job hunting.

COmmuNICATIONs Our volunteers told us… that emails and the Anthony Nolan website are the methods of communication they find most useful.

In response... we published a whole new section on our website for our Marrow volunteers. It’s a one stop shop for volunteer profiles, Marrow news, information and resources.

We are also looking at how we can improve our web pages for all our volunteers and make sure they are a valuable and useful resource.

CONNeCTING WITh ANThONy NOLAN Our volunteers told us… there is more we can do to keep them informed and involved in decision-making and consult them about changes that affect their role.

In response... we launched a volunteer panel, to make sure our volunteers have their voices heard. By being part of the panel, volunteers are able to feed back on our work and influence how we develop volunteering at Anthony Nolan.

If you volunteer for Anthony Nolan and would like to be part of the panel we would love to hear from you! You just need to be enthusiastic about volunteering and have lots of thoughts and ideas about your experience with us.

Please just drop Liz, our Volunteer Engagement Manager, an email at volunteering@anthonynolan.org or call 020 7284 8250.

£60It costs £60 to recruit and retain each new person on the register.

WE NEED MORE YOUNG MENYoung men aged 16-30 are the most likely to be chosen to donate – over half of those who donated in the last two years were young men.

But they only make up 15% of the register.

£2.12MIn 2014-15 we spent £2.12 million on groundbreaking research.

30-70%Transplantation is a complicated procedure and the probability of long-term survival can range between 30-70% depending on a variety of factors.

Only 20% of black, Asian or minority ethnic transplant recipients receive the best match.

The figure for Northern European transplant recipients is 60%.

BAME

The average age of our donors is 31.

The most common age of donors is 23.

ANTHONY NOLAN IN NUMBERSEvery year, we update the organisation’s key stats, to ensure our messaging and communications are as accurate as possible. This infographic showcases a few key stats that you’re likely to use over the coming year.

EvERY 2O MINUTES SomEonE IS dIagnoSEd wITh Blood cancEr.

31,200We helped over 1,200 people last year. But anthony nolan can only find the best possible match for around 60% of transplant recipients.

Early indications from anthony nolan’s  recent research are confirming that the use of donors under 30 is associated with a trend towards better survival rates.

3123

15%

we give the chance of life to three people every day.

60%BEST POSSIBLE MATCH

20%