MAY 2018 1

OUR PLANFOR THIS YEAR

MARROWERS FROM INSPIREDTO HIRED

MEET LAMARTHE STAR OF OUR NEW CAMPAIGN

CELEBRATINGOUR SCIENTISTS

ISSUE 29 | MAY 2018

THE ANTHONY NOLAN NEWSLETTER FOR STAFF AND VOLUNTEERS

BE A LIFESAVERLAMAR ROBERTSPRO-BASKETBALLER AND LIFESAVER

02 INSIGHT 29 MAY 2018 03

‘In recent years donor registries around the world have focused their attention on recruiting younger donors; in 2012 Anthony Nolan became the first register to extend its joining age to 16, and introduced an upper limit of 30.'

Professor Steven Marsh, Director of Bioinformatics at the Anthony Nolan Research Institute and co-author of the paper ‘Development of an Unrelated Donor Selection Score Predictive of Survival after HCT: Donor Age Matters Most’, says:

‘These results are extremely significant for transplant clinicians who have patients with multiple HLA matches. We hope this will help clinicians feel more confident when selecting donors for their patients.

‘In recent years donor registries around the world have focused their attention on recruiting younger donors; in 2012 Anthony Nolan became the first register to extend its joining age to 16, and introduced an upper limit of 30. We’re already seeing the results of this policy: in 2017-18, 75% of Anthony Nolan donors were aged under 30, compared to only 41% in 2009. In the same period, the median age of Anthony Nolan donors fell from 34 to 28. It seems clear that this move has made it easier for clinicians to select younger donors and, we hope, has given more patients the best chance of survival post-transplant.'

Previous studies have suggested that donor characteristics including sex, ethnicity, blood type and previous pregnancies could all affect patient survival, making it difficult for transplant clinicians to rank donors if a patient has multiple HLA-matched donors.

Anthony Nolan was part of an international study, led by the Centre for International Blood and Bone Marrow Transplant Research (CIBMTR) in Wisconsin, USA, to analyse more than 10,000 unrelated donor stem cell transplants which took place between 1999 and 2014, where the donor and patient were HLA-matched (to the US standard 8/8).

Their aim was to produce a definitive hierarchy of donor characteristics and how they affect patient survival, to allow transplant clinicians to be confident when selecting a donor for a patient with multiple matching donors.

Surprisingly, they discovered that the only donor factor which could be reliably associated with patient survival in this cohort was age; the younger the donor, the more likely the patient was to survive.

A patient with two matching donors aged 10 years apart would be 3% more likely to be alive two years after transplant if the younger donor was selected, regardless of other donor characteristics.

Importantly, the study has shown for the first time that the trend between donor age and patient survival is linear (see graphic); previous studies have compared broad age cohorts, making it difficult to differentiate between donors within the same age cohort.

RESEARCH SHOWS IMPORTANCE OF DONOR AGE

WELCOME TO INSIGHTWELCOME TO INSIGHT 29Anthony Nolan is kicking off the new financial year with an ambitious campaign to raise awareness of our lifesaving work and encourage more young men to join the register, and a new plan for how we can have the biggest lifesaving impact in 2018/19 and beyond. This edition we go behind the scenes on the Be a Lifesaver campaign with its star, Lamar Roberts, and get to grips with the detail of our business plan.

We also talk to Ann O’Leary about plans to develop our donor and transplantation services this year, and explore the latest research on the importance of donor age. Plus, we’re featuring our members of staff who were former Marrow volunteers, highlighting a heroic milestone for our education programme, and celebrating our lifesaving scientists.

Ian Pithouse, Editor, Insight

INSIGHT 29 WAS BROUGHT TO YOU BY Alice HirstCharlotte HughesHelen BillamIan PithouseJamie CrossLouise JonesRobbie BeveridgeSarah Reilly

If you would like to contribute to future issues of Insight, get in touch with: internalcomms@anthonynolan.orgCover image: Lamar Roberts, Be A Lifesaver Campaign 2018

MAY 2018 1

LIFESAVING SCIENCE:IMMUNOTHERAPY

SAYING THANK YOUTO STAFF & SUPPORTERS

ANTHONY NOLANGOT FESTIVE

MADE BY JAMIE CROSS

ISSUE 29 | MAY 2018

THE ANTHONY NOLAN NEWSLETTER FOR STAFF AND VOLUNTEERS

A new study suggests that after HLA matching, the age of a stem cell donor is the most important characteristic influencing patient survival.

NO

Ethan Butress, Anthony Nolan's first 16 year old donor

What makes the perfect match?

In this study, only donor age could be reliably associated with patient survival but other research has shown that factors such as CMV status (Cytomegalovirus – a common virus that is dormant in most healthy people but can be reactivated in patients undergoing transplant who have a weakened immune system) are important. For example, Anthony Nolan’s ground-breaking Patient/Donor project, which studies the genetic makeup of more than 2,500 pairs of stem cell donors and their recipients, gathered over 20 years from more than 40 UK transplant centres, has previously found that matching for CMV can offset an HLA mismatch. The Patient/Donor team has now analysed the DNA of the patient and donor pairs in even more detail, and the findings look set to establish new factors that affect patient outcomes when they are published later this year.

The differences in findings between the projects could be due to differences in the patient cohorts – the patient population for this study was drawn from the USA, which has different treatment regimes and matching standards to the UK. The two studies reveal different parts of the big picture of what makes the perfect match.

04 INSIGHT 29 MAY 2018 05

BE A LIFESAVER

Anthony Nolan recently launched a new advertising campaign to increase understanding of our work, recruit young men to our register and make this 16-30 audience want to find out more about us.

The campaign centres around a film telling the story of Lamar Roberts, a London Lions basketball player who joined the register last year, and encouraging young men to sign up to the register. Young men are most often selected to donate and are currently under-represented on the register.

The film is being promoted through paid advertising on Sky TV and online, and is supported by a comprehensive PR and digital plan – we are using Lamar and other patient and donor stories to gain online and national media coverage, and to spread the word on social media and our website.

Our approach has been shaped by extensive research with the target audience. We chose film as the main channel because young men are 10 times more likely to engage with videos on social media than any other type of post. And when researching the film with groups of young men aged 16-30, they fed back that Lamar’s story resonated with them. They thought Lamar’s connection to the organisation is genuine, and they liked that there was a twist in the story and that he now gives back to the community.

So, who is Lamar, and what makes his story so inspirational? We put some of our staff and supporters’ questions to the man himself.

LAMAR Q&ALamar Roberts is a professional basketball player for the London Lions and founder of the Right Development Foundation, a community basketball and youth outreach project. Lamar joined the register at a London Lions game in 2017.

Why did you join the Anthony Nolan register?

I joined the Anthony Nolan register because it was an opportunity for me to fulfil one of my goals in being a part of a campaign that has a purpose and a meaning to it. Being able to become a lifesaver was a great opportunity for me.

Why do you think young men are reluctant to join?

I think young men might think of the process as being maybe long, but it’s actually quite a quick process in registering to become a part of the database. Actually, it’s really straightforward and… being on the register… opens up doors for someone who needs your help.

How does it feel to be involved in a campaign that aims to get more people from black, Asian and other minortiy ethnic (BAME) backgrounds to join the register?

There aren’t that many young black men on the register, so being one of the few I would want and hope for more people to get involved who are from black and minority backgrounds. Just so that people who actually need our help can have a better chance.

When and why did you decide to turn your life around?

At the age of about 17 I was going down a path that wasn’t really benefitting me, wasn’t working with me towards my future. At that time I found a letter from my mum. On the letter it said to do my basketball and to be good for my family. Seeing that letter opened my eyes and allowed me to take steps in a better direction. If it wasn’t for her and the people who have influenced me along the journey, I don’t know where I’d be today.

Do you have a hero?

I actually look up to my dad a lot. I’m always phoning him and seeing if he’s ok and stuff. Just seeing how he has taken care of me, I could never forget how good of a man he’s been towards me. I love my dad!

What is the Right Development Foundation?

We do a lot of basketball and sports activities with young people on a daily basis. We work with those aged 8-25. We just like spending time with them, helping them with their basketball skills. Most recently we’ve tried to open up a homework club for them and workshops, and like a little youth club where they can just come and hang out and everyone can discuss positive things. We spoke about organisational and communication skills with them. We spoke to them about setting goals and plans and how to execute those plans. We want to do more with our homeless outreach. On our register we have about 80–100 people … we’ve just started going into another area so that list is growing.

What do you like to do in your free time?

I like to spend some time with my family and friends, go to the cinema, watch the latest movies. I like to just rest sometimes and chill out. I like to play some PlayStation.

HELP US SHARE THE STORY

VISIT our campaign webpage anthonynolan.org/bealifesaver

LIKE the campaign posts

SHARE the video with your networks

JOIN IN the conversation on our social media channels using #BeALifesaver

Lamar, playing for London Lions A still from the Be A Lifesaver campaign

04

06 INSIGHT 29 MAY 2018 07

DIVERSIFYING INCOME

We will explore, test and implement new ways of generating funding and income, and engaging with supporters.

• We will identify and test new fundraising channels, informingfuture investment decisions.

• Voluntary fundraising will come from broader and moresustainable sources.

• We will scope and plan a range of income-generatingcommercial initiatives in line with our lifesavingaims and values.

• Insight, data and market research on our supporterdemographics will inform our engagement strategies tomaximise the number of ways people support us.

• Our investments will allow us to secure medium/long termreturns that will support strategic decisions over the nextfive years and beyond.

LAYING THE FOUNDATION FOR OUR NEW STRATEGY

This year is the last of our ambitious strategy. We will define our ambition for the next three years, informed by an understanding of where and how we can maximise impact. And we will strengthen our foundations to ensure we are able to realise this ambition.

We will develop a new three-year organisational strategy, informed by the views and ideas of staff and key stakeholders.

• Our staff will have the right skills and knowledgeto do their jobs well, and we will attract and retainhigh-calibre employees.

• We will update our bioinformatics infrastructure touse new technologies and develop typing protocolsfor new genetic markers.

• We will build our capacity and capability by mapping,reviewing and improving business processes, includingproject and change management.

EMBARKING ON OUR DIGITAL JOURNEYWe will define our digital vision and better understand where we should invest in technology for maximum impact. We will strengthen our capacity and capability so we are all digitally equipped.

• We will continue to strengthen our technologyinfrastructure by replacing old systems with moreflexible and reliable platforms.

• We will enhance our internal software development capacityand capability, allowing us to do more in-house and at afaster pace.

• We will make the most of digital technology across ouroperations and activities, including developing a digitalinterface with transplant centres, enhancing donorrecruitment and management, and testing digitalfundraising ideas.

OUR PRIORITIES FOR THE YEAR With the start of a new financial year comes a new plan for how we can have the biggest lifesaving impact in 2018/19 and beyond.

Each year, Anthony Nolan’s Strategic Leadership Team reflects on progress and performance in all aspects of our work, considers what has changed in our internal and external environments, and sets priority areas where we feel we need to refocus our efforts to have the most impact. Each part of the organisation then works towards these priorities as they draft their detailed plans for the year ahead.

This year we have six priority areas: patient focus, enriching the register, diversifying income, laying the foundations for our new strategy, raising awareness and embarking on our digital journey.

We are committed to investing time and money in these areas, including creating new staff posts to help us maximise our impact on patient outcomes. Read on for more details on our planned work in these areas and what it will mean for our work, our people and our patients.

PATIENT FOCUS

• We will continue to provide direct practical support forpatients through our network of Clinical Nurse Specialists(including two new nurses) and two new ClinicalPsychologist posts.

• We will continue to support transplant centres, seekingto provide stem cells for transplant more quickly andensuring clinicians have access to educational materials andresources.

• We will work closely with patients and their families topilot proactive patient appeals as a means of recruitingmore donors to the register and fundraising to support ourlifesaving work.

• Our cell therapy research will pave the way for post-transplant therapies that reduce complications.

• We will accelerate translation of research findings intoclinical practice, bringing treatments from bench to bedsidethrough validation of research findings and supporting therecruitment of patients to IMPACT clinical trials.

ENRICHING THE REGISTER

Recruiting more of the right donors is crucial in helping patients find the right match. We will target recruitment activity to groups that are currently under-represented on the register and ensure our recruitment approach reflects the latest research findings.

• We will target recruitment of potential donors through newpartnerships and activities, especially for young men andblack and minority ethnic groups.

• Our recruitment approach will reflect the latest findings onwhat makes the best match from our Patient/Donor study.

• We will improve our donor care and experience byproviding practical support for our donors, includingout-of-hours support.

• We will increase recruitment activities across Scotlandand Northern Ireland, and enrich the register by providingmore details on our most in-demand donors through thephenotype project.

RAISING AWARENESSWe will invest to increase awareness of our brand and to build understanding and support for our lifesaving work.

• We will design and deliver campaigns and materials to raiseawareness of Anthony Nolan among the general public. Thiswill strengthen our fundraising, donor recruitment and ourability to influence policy.

• We will define key campaigning and communicationpriorities to ensure patients’ experiences are heardby policy makers.

• Our existing and new supporters will better understand ourwork and the many ways they can support Anthony Nolan.

Debbie Anderson, Clinical Nurse Specialist

We will support patients on every step of their transplant journey, and ensure all our work is informed by the needs and experiences of patients.

Recruiting donors at London Comic Con

Anthony Nolan cheerpoint at the Virgin Money London MarathonBioinformatics

08 INSIGHT 29 MAY 2018 09

Q&A WITH ANN O'LEARY

08 MAY 2018 09

What does your role involve?

Donor and Transplantation Services is made up of five teams: Donor Liaison, Donor Provision, Donor Follow Up, Volunteer Management, and Logistics and Workups. My teams, along with the Search and Selection team, are very much responsible for the day-to-day work of making sure that lifesaving donations happen and that donors are looked after.

My role as Assistant Director involves supporting the teams with this crucial day-to-day work, but also working on longer-term projects and strategies. It’s incredibly diverse - you’re working on such a range of different things every day. From the regulatory side of provision – making sure that we comply with everything we need to for our HTA (Human Tissues Authority) licence – to working with our international partners to develop new strategies.

What’s in your plan for this year?

We’re planning to further develop our ‘phenotype’ project to enrich the register with the highest resolution allelic-level HLA typing and CMV status for young men with the 1,000 most common HLA types. Providing this information upfront makes these donors more likely to be chosen for transplant, and we also confirm that they’re committed to donating when we contact them to arrange blood samples for the higher-level typing. They’re ideal donors in so many ways.

We want to add over 3,000 more potential donors to the project this year – more than double the number for 2017/18. And we’re laying the groundwork to communicate with other segments of the register and enrich the data we have on them.

We’re also going to be looking at the donor experience – mapping people’s experience, from when they come up as a potential match, to going on to donate, to the follow-up they get for up to 10 years afterwards. We want to understand: what is the donor experience? Are there gaps or anything we could do better? Are people being supported consistently?

Our Logistics and Workups team will be leading on a project within OPS (Operations and Patient Services) to make us even more paperless, including looking at reducing the amount of paper used and the costs involved in our archiving.

Donor Provision is looking at doing a trial of self-administration of GCSF (Granulocyte Colony Stimulating Factor) – the drug we give to donors to stimulate their bodies to release stem cells into their bloodstreams. At the moment, we send a nurse out to give people their injections, but there could be big benefits and cost-savings if people administer some of the course themselves.

Ideally, the injections should be done at the same time each day, so currently the donor is tied to being in a certain place at a certain time. Doing it themselves would give them a lot more flexibility to fit around their lives. We’d still send out a nurse for the first day to monitor them, make sure there are no issues and show them how to admister the injections, and it would always be optional – if someone wasn’t comfortable, we’d send a nurse out. Patients already administer GCSF themselves and a number of registers around the world allow donors to do the same.

Donor Follow Up is going to put together a plan for psychological support for donors. At the moment, we don’t really do anything formally in this area, so again it’s a case of looking at what people need and what we could do – scoping this year and implementing work next year.

We’re already making great progress with recruiting more volunteers. We had training days recently for new volunteer couriers – 19 in London and 13 in Manchester. That’s really exciting and timely as some of our most prolific couriers will soon be retiring!

We’re also trialling some out-of-hours cover – until 8pm Monday-Thursday, and potentially Saturday mornings, to see if we get a better uptake for verification typing if we contact people outside of standard office hours.

We’ll further improve our work to recruit donors on to external research trials. We’ll track these donors better and formalise the process with our collection centres, as well as the transplant centres involved in the trial, to make everything more clear.

And then there’s a whole host of things that aim to reduce the time to transplant. Things like phlebotomy – how we get

blood samples for verification typing from donors who are selected as a potential match. At the moment, we either advise donors to go to their GP or we book in our homecare provider to visit them and take a sample, but they need three days’ notice. So just with the process of posting the blood testing kit out, sample-taking and samples coming back in the post, there’s a lot of time taken. Reducing that time could make the donor more likely be chosen, as the transplant centre will have verification that they’re a good match, and reduce the overall time to transplant, which can be crucial for patient outcomes.

What’s the one thing you want everyone to know about your team’s work?

In OPS we’re always really keen to help people understand how the process of finding and providing a donor for a patient who needs a transplant actually works. Anthony Nolan does so many different things – all of them crucial to our aim of saving and improving lives. But our donor register is where we started and for me it’s still the core of what we do. Sometimes people don’t realise all the work that goes into it and all the different steps along the way and the complexity of it. It’s not as simple as you may think it would be.

I’d also like people to see how great the staff in OPS are – they work so hard and they’re so dedicated to supporting our lifesaving donors – obviously with a view to ultimately support the patient. When you see those tweets or Facebook messages about how great the support has been, they’re talking about the people in Donor and Transplantation Services – I’m so proud of them for that.

What do our values mean to you?

You experience passion every day you work at Anthony Nolan – you meet people who feel so strongly about what they do, and the impact they can make for patients, donors, and customers. Accountability for me is fundamental – we have such an important job and we all have to be accountable for who we are as an organisation and the service that we deliver. I genuinely think we do improve every day. You might not always see it, but when you look back, you can see we’ve made big leaps over the years. This is a different organisation than the one that I joined over seven years ago – we’ve developed into a really professional and excellent service provider for our patients. And I think it’s truly part of the culture. People aren’t afraid to tell you if they think that something could be done better – and that’s a really good thing.

Ann O’Leary is Associate Director of Donor and Transplantation Services. Insight caught up with Ann to find out more about the day-to-day work of her teams and how they plan to improve things for donors and patients this year.

'We want to add over 3,000 more potential donors to the project this year – more than double the number for 2017/18.'

10 INSIGHT 29 MAY 2018 11

FROM INSPIRED TO HIRED

Many people first find out about Anthony Nolan through our marvellous Marrow student groups. Some are inspired to join a Marrow group, and some have even stayed involved in our lifesaving work beyond university by becoming a member of staff at Anthony Nolan. Insight found out more about what they do at Anthony Nolan, their proudest moments and how they got involved in Marrow in the first place.

Online Recruitment Lead and former National Marrow President

‘I look after recruiting people to the register online, which involves digital marketing to target specific audiences, making sure they all get their swab packs in the post and then how we retain these people on the register.’

How did you get involved with Marrow?I first heard about Anthony Nolan at a young age when my mum was diagnosed with myelodysplastic syndrome (MDS) and received a transplant through Anthony Nolan. I grew up telling everyone and anyone about the register and recruited all my friends so it just made sense to get involved with Marrow!

What is your proudest Marrow moment?Every recruitment event was a real highlight. After each event, I used to text my mum to let her know how many people we recruited, take a step back and just think how any one of those people could be a match. I remember one of my first events where we recruited 19 people. I felt emotional that any one of them could potentially save someone else’s mum’s life!

Donor Provision Coordinator and former Hertfordshire Marrow Secretary and Treasurer

‘When a donor comes up as a match, I Iet them know and then support them through the donation process, from making arrangements for their medical and donation to being a contact point for any queries they have.’

What is the best thing about working at Anthony Nolan? Knowing that everything I do, every day, is working towards people receiving lifesaving transplants. In my role, I love talking to donors and hearing how excited they are.

What is your proudest Marrow moment?All of it! Cliché, I know, but I really enjoyed my time with Marrow.

Senior Search & Selection Co-ordinator and former St George’s Marrow Clinical Co-ordinator

‘In the Search and Selection team, our role is finding the patient that all-important donor. We look at HLA alongside lots of other factors such as donor age and blood group in order to provide donor recommendations.’

What inspired you to work at Anthony Nolan? I knew I wanted to continue to work in science but wasn’t so sure about working in a lab. As I loved my time volunteering with Marrow so much, I ideally wanted to work in the charity sector.

What is the best thing about working at Anthony Nolan? A huge amount of job satisfaction as well as getting to work alongside such a great team of highly motivated and passionate people (that and all the tea rounds!).

Marrow Volunteer Engagement Co-ordinator and former Lancaster Marrow Vice President

‘I offer support to our current Marrow groups and expand our work into new universities.’

What is your proudest Marrow moment?During my final year at university, we found out someone that we had recruited had gone on to donate. That was special and made it all worthwhile!

What inspired you to work at Anthony Nolan?I realised during my Masters in Maths that what I actually loved about being at university was volunteering for Marrow and I didn’t want to give that up!

Philanthropy Coordinator and former Kent Marrow Fundraising Co-ordinator

‘I work with Trusts to find a project for them to fund. I love my job as I’m able to boast about all the amazing things Anthony Nolan does, while having the patients we care for at the heart of everything.’

What is your proudest Marrow moment?I couldn’t choose just one proud moment. I am so proud to have volunteered with some of the most amazing people. I was pretty scared to start university, and it seemed like from the moment I stepped into that first meeting, I was adopted by the Marrow family. #BestMarrowYearsEver

What inspired you to work at Anthony Nolan?I didn’t know what I wanted to do as a career when I went to university, but volunteering changed everything.

Register Enrichment Co-ordinator and former Southampton Marrow President

‘I contact people on our register who have been identified as having some of the UK’s most popular tissue types and ask them if they would like to do some further testing for us. This testing allows us to improve their record on the register and therefore makes it easier for the donor to be matched to a patient in need of a transplant in the future.’

How did you get involved with Marrow?In 2010 my brother was diagnosed with aplastic anaemia and needed a stem cell transplant. Fortunately, I was found to be a match for him and he could make a full recovery. My family were always very aware of how lucky we were that my brother’s transplant was such an easy process for us, and so we wanted to do our part to help others who were not so fortunate. My brother and I helped at a few clinics at our school and so when I went to university I knew that it was something I wanted to continue with.

What is the best thing about working at Anthony Nolan?The best thing about working at Anthony Nolan is the feeling that you are doing something worthwhile. This is an organisation that is saving lives and that is something that I get to be a part of which is amazing.

Search & Selection Co-ordinator and former Surrey Marrow President

‘I work in the Search team with Charlotte. The best part of the role is being able to play a part in finding a perfect donor for the patient.’

How did you get involved with Marrow? I started volunteering with Marrow in my first year at university. It meant a lot to me as I was very aware of the significance of stem cell donation, since my younger brother had passed away in 2003 after not being able to find a suitably matched donor.

What is your proudest Marrow moment?One of my best friends signed up to the register at university and was found to be a match for a patient and went on to donate. He recently found out that they are still alive and thriving because of the donation!

12 INSIGHT 29 MAY 2018 13

Anthony Nolan’s pioneering education programme teaching those aged 16-18 about the importance of stem cell, blood and organ donation visited its 1,000th school in April.

In March, Liverpool Marrow and donor recruitment volunteers from across the north west swapped their usual venues of student unions, sixth forms and colleges for the Liverpool Exhibition Centre.

Newcastle Sixth Form College became the 1,000th school to deliver the education programme, known as the Hero Project.

Students participated in inspirational sessions led by Anthony Nolan’s trained volunteers, which explained how they could save a life. After the presentations, young people had the chance to register as donors.

Anthony Nolan’s education programme, formerly known as Register & Be a Lifesaver (R&Be), is the legacy of journalist Adrian Sudbury, who died from leukaemia aged 27. Adrian campaigned for better education about donation and presented a petition to the Government in 2008, shortly before he died. His vision became reality in 2009 when the education programme was launched as a pilot scheme. Adrian’s legacy continues to inspire, with Anthony Nolan delivering its education programme in the form of the Hero Project.

Since the programme began, over 300,000 young people have been educated and more than 80 students who were inspired to register have gone on to donate stem cells to patients in need of lifesaving transplants.

Gerard Garvey, Principal of Newcastle Sixth Form College, says: ‘The staff and students at Newcastle Sixth Form are excited to be taking part in the Hero Project. There is a strong interest in the work of Anthony Nolan, especially given the large number of students at the college studying STEM [Science, Technology, Engineering and Mathematics] subjects and interested in progressing to work in Health Science.

‘The students at Newcastle Sixth Form are well known for their positive contribution to the local community, and we are really pleased that the Hero Project allows students a chance to help others by registering as potential donors.’

Henny Braund, Chief Executive Officer at Anthony Nolan, says: ‘We are delighted to visit the 1,000th school as part of our pioneering education programme, the Hero Project, which has helped provide a second chance for countless people in desperate need of a lifesaving transplant.

‘Our research has highlighted the relationship between donor age and patient survival rates, so it is incredibly important to continue teaching those aged 16-18 about the importance of stem cell donation.’

They were there for Liverpool Comic Con – one of the many entertainment and comic conventions held by various organisations across the country.

The volunteers were surrounded by people dressed as storm troopers, Boba Fetts, Captain Americas and a host of other characters, but as entertaining as the pretend superheroes were, they were more interested in the real heroes – potential stem cell donors.

Alice Hirst, Anthony Nolan’s Regional Register Development Manager for the North West, says: ‘We had a very successful event and recruited 71 potential lifesavers. We are so lucky to have a team of skilled and keen volunteers ready to travel from far and wide to volunteer at these events – they’re my personal heroes.’

One of the volunteers, Natasha Banks, has a very personal reason for volunteering for Anthony Nolan.

Natasha explains: ‘I have now volunteered at two comic con events for Anthony Nolan and have loved both of them. I am extremely passionate about raising awareness about stem cell and bone marrow donation as it is very close to my heart. In 2014 my niece, Tayla, suffered a relapse of acute myeloid leukemia (AML) after being in remission for two years.

‘We held a local donor drive recruiting over 100 local people as potential donors! Tayla was lucky enough to find a positive match from a register in Germany.

‘I feel it is vital to educate as many people as possible about Anthony Nolan and the difference people can potentially make by signing up. I can't wait for my next chance to volunteer.’

FINDING THE REAL HEROES AT COMIC CON

Recruiting donors at Liverpool Comic Con

Natasha and Kirsty, posing with Darth VaderCarol Olley, Regional Register Development Manager, giving the 1,000th presentation Damica, Liverpool Marrow volunteer boarding the Tardis

14 INSIGHT 29 MAY 2018 15

Anthony Nolan is lucky to have world-class scientists leading our work to find lifesaving stem cells for people who need transplants, discover what makes a perfect match, and improve treatments after the transplant. What better time to celebrate them than British Science Week?

Running from 9-18 March, British Science Week was an opportunity to recognise the contribution our scientists make and to raise awareness of Anthony Nolan as more than just a donor register.

We asked our science staff – whether they work in Labs, Research, the cord blood programme, or our donor search and selection team – to share a selfie and let us know why they do their job. We had a flood of responses, with some brilliant reasons for why people find their work so fulfilling.

Daisy Henesy, who works in the immunotherapy group, said: ‘Here I am

using a microscope to count colonies of cells, which is how we measure stem cell function. It's great to be carrying out research that contributes to the lifesaving work of Anthony Nolan.’

Sharon Vivers, Head of Stem Cell Search and Selection Services, said: ‘Not all scientists wear lab coats! I love my job because of the satisfaction when my team finds the perfect donor for a patient! No two patients are the same, so every day is different.’

Many thanks to all our scientists who are at the forefront of making transplants more successful.

British Science Week was also a great time to promote IMPACT, the stem cell transplant clinical trials network which Anthony Nolan funds alongside Leuka and NHS England. IMPACT will run up to three trials a year over the next four years, creating opportunities for patients to benefit from groundbreaking new treatment. Patients will be recruited at the 22 transplant centres participating in the network, with 10 of these centres receiving funding for a dedicated research nurse.

We highlighted the appointment of the first IMPACT research nurse, Sister Jane Nunnick, who is based at Queen Elizabeth Hospital in Birmingham. Jane has 25 years’ experience in haematology and was previously a bone marrow transplant coordinator.

Jane says: ‘I love working in transplants. These trials will have an ‘impact’ on patients. They could mean that patients enter remission and are cured of their disease more quickly.

‘The field of stem cell transplantation has moved on dramatically since I’ve been a nurse. When I started, if you were 40+ you couldn’t have radiotherapy, so you couldn’t have a transplant. You had chemo and took your chances. Then we started doing reduced intensity conditioning so we could start transplanting older adults, and now the oldest patient we’ve had here is 75. But the clinical trials we carry out through IMPACT will open the door to even more patients. We still have patients who can’t have a transplant, for whatever reason, and many patients who relapse post-transplant. These trials can make it more likely that patients’ diseases won’t come back.’

As a Donor Provision Coordinator, Glenn Culbard supports people from when they come up as a match for a patient to donating their stem cells for a lifesaving transplant. Glenn shared some of the little-known facts about donation that he’s discovered in his job.

After the donor’s medical, that’s when it all clicks into place‘It can be difficult to paint the picture of a donation when speaking to a donor over the phone, but after the medical that’s when things can really click into place for some. Their understanding increases and they can be more committed. This is usually down to having an in-depth conversation about their health in regards to the donation with a doctor.’

Toxoplasmosis, the mysterious infection‘There is a little-known infection known as Toxoplasmosis. It has about 350 reported cases in the UK every year but it’s estimated that the number might actually be as high as 350,000. There aren’t any symptoms a donor would notice but it would be very detrimental if passed to a recipient. This is tested for at medical and if it is present, the donor is made

unavailable for six months; at that point the search for a new donor may have to take place.’

What will and won’t postpone a donation‘A donor with a broken bone or, more surprisingly, a patient with a tooth infection will definitely postpone a donation. If the donor’s caught a common cold, such as Rhinovirus, they’re usually ok to go ahead but this is the transplant centre’s choice.’

When the job is done‘A Donor Provision Coordinator only considers their job completed once the courier expenses and delivery transit record have been returned and dealt with.’

BRITISH SCIENCE WEEK

Daisy Henesy, PhD Student

Glenn Culbard, Donor Provision Coordintor

Sister Jane Nunnick, IMPACT research nurse

A DAY IN THE LIFE OF A DONOR PROVISION COORDINATOR

PEOPLE IN THE UK NEED A STEM CELL TRANSPLANT

2,000+EVERY YEAR

A SECOND CHANCE OF LIFE

16,000+

1974ANTHONY NOLAN

HAS GIVEN

SINCE

PEOPLE

LEAD TO BETTER SURVIVAL RATESFOR PATIENTS

30OUR RESEARCH CONFIRMS THATDONORS UNDER

A SECOND CHANCE OF LIFEEVERY DAY

3WE GIVE

PEOPLE

SOMEONE IS DIAGNOSED WITH BLOOD CANCER OR A RELATED DISORDER

14EVERY

MINUTES

ARE REGISTERED AS STEM CELL DONORS

2%ONLY

OF PEOPLE IN THE UK

NURSES IN HOSPITALS ACROSS THE UK LAST YEAR

8ANTHONY NOLAN FUNDED

OUR COST TO RECRUIT ONE POTENTIAL LIFESAVER TO THE REGISTER IS

£40A SECOND CHANCE OF LIFE LAST YEAR

1,300PEOPLEWEREGIVEN

OVER

ANTHONY NOLAN IN NUMBERS

anthonynolan.org

Staff can find more stats, along with key organisational messages and stories, on the Communications page of Matchbook.

Reg charity no 803716/SC038827 05/181541CM

REGISTER IN THE WORLD TO RECRUIT 16-YEAR-OLDS

1stANTHONY NOLAN IS THE