December 12, 2017

NOW is the time to share your views on a new organ donation system.

By

Screen Shot 2017-12-11 at 22.03.07Screen Shot 2017-12-11 at 22.02.29Team Margot Foundation welcomes the Government consultation on an organ donation opt-out system, which has launched today. It’s a vital opportunity for us to make systemic changes for the better, so that fewer people will die waiting for a suitable organ donor.

However, central to the success of any new system on organ donation is the need for us all to talk to our families and have “the conversation”.

We urge people in their everyday lives, to think about this and make a decision in their own heads, regardless of the legislative framework.

And to then talk to their families and loved ones.

Screen Shot 2017-12-11 at 22.03.28TM_Small_Full Colour_125The consultation can be found here: https://engage.dh.gov.uk/organdonation

NOW is the time to share your views on a new organ donation system.

Please click the above link to take part. Then share this post.

Thank you.

Team Margot
Together, saving lives

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Posted in: Journal
November 3, 2017

Team Margot & NHS Blood and Transplant launch new primary school education programme: ‘Giving to help others’

By
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Presenting in the Map Area at City Hall, London, on 30 October 2017, alongside Jesse Panda (13) from Oasis Academy Waterloo, who followed my talk with Spoken Word

Screen Shot 2017-11-03 at 14.35.42For much of this year, our attentions and efforts have been directed towards breathing life into an idea that we have been talking about for a while now: launching an education programme aimed at children of primary school ages, called ‘Giving to help others‘.

Problem: raising awareness of under-representation of BAME communities on donor registries

Screen Shot 2017-11-03 at 14.35.59It is recognised that there’s a paucity of bone marrow/stem cell, blood and organ donors from the

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Elisha Rankin-Hart (13) from Queens Park Community School also spoke about her father having a kidney transplant

Black, Asian, Mixed Race & Minority Ethnic (BAME) communities. These communities are woefully under represented on the various UK registers and are the least engaged stakeholders. From the work that we are doing, we know that this problem is widely acknowledged and understood.

There are many organisations and community groups working hard to improve the situation and whilst there is progress being made, the cut through and engagement remains disappointing. Virtually all of this good work is aimed at adults (16+ years of age).

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Head of School, Lorram Black, delivers the Giving to Help Others assembly to over 400 children at Dog Kennel Hill Primary School on 2 October 2017

Education and awareness for younger children

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Ian Trenholm, CEO of NHS Blood and Transplant

We believe that there’s an opportunity to take a longer-term approach to this issue through education, targeted at children of primary school ages. If we can reach out to children whilst their minds are still relatively open and make them conscious & aware of how “giving to help others” can help save someone’s life, then we believe that the UK registers will make meaningful strides towards addressing these issues, in the longer term.

Programme: supporting behavioural change through a tailored education programme

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Josie Todd, Project Manager for London Curriculum, Greater London Authority

Working with children of primary school age, their teachers, parents and carers, our education Screen Shot 2017-11-03 at 15.43.55programme seeks to create & develop a dialogue for the issue of donation to be discussed in a safe and secure setting that is designed to engage young people at an appropriate level.  The overarching objective in the longer term will be that greater engagement and awareness will result in an increase of the number and proportion of people from BAME communities becoming donors.

Our work is therefore aimed at developing the dialogue, tools and methodologies to an education programme that will:

  1. Screen Shot 2017-11-03 at 15.44.30result in the children themselves being more informed of the good that being a donor can bring, how they can become a donor when the grow up and have reached the age of consent. The programme will aim to promote being a donor as the norm, rather than the exception
  2. have the potential to be a type of peer educator programme when children, parents, teachers and carers will share what they have learned and this will have a positive influence on their families and loved ones, encouraging more of them to engage and act; this will again benefit all forms of donation and help increase the diversity of the donor base.

Since February, we have been working with the fantastic people at Edcoms and Munro & Forster and more recently, Koop, in collaboration with our partners, NHS Blood and Transplant and on Monday this week, we finally presented the findings from our initial test of concept at Dog Kennel Hill Primary School, in Camberwell, London.

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Children are encouraged to visit givingtohelpothers.org at home, with their family & loved ones. This new website contains information and links on how to sign up as a donor, as well as teacher’s notes, video animation and assembly presentation

It was fantastic for Margot’s auntie Nadia & I to see the assembly being delivered, first hand and we were also privileged to speak to some of the pupils afterwards.

Overall, we were thrilled to receive the very positive feedback from teachers, teaching assistants and pupils alike.

As a result of this initial pilot, we have tweaks to make to the content & delivery of the assembly presentation and will be beginning a more involved research programme during the course of the next several months, to trial more extensively and monitor outputs.

Our initial aim is to raise around £1 million to fund the programme development and roll out over the next 5 years and to put formal structures in place by Summer 2018.

This is a radical departure from how Team Margot Foundation has operated hitherto, as an entirely unpaid volunteer charity and we are approaching philanthropists, investors and trusts to secure the funds needed to develop & scale our education programme going forward.

‘The Power of One’ photographic exhibition

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The John Ruskin School Choir started us off…

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It got emotional – with Becs Palmer, who heads up the Education and Youth team’s Peer Outreach Workers

The launch of our ‘Giving To Help Others’ education programme took place during the afternoon of Monday 30 October 2017 and then later on the same day we officially launched ‘The Power of One’ photographic exhibition with City Hall’s Education & Youth Team Peer Outreach Workers (POWs).

The exhibition features portraits by photographer Cath Harries of the POWs, donors who registered because of Margot & the work of Team Margot, sickle cell patient Chanel Taylor and Margot’s Consultant, Head of Haematology at Great Ormond Street Hospital, Dr Phil Ancliff who all devote their time to encourage people within their communities to register as potential stem cell / bone marrow donors.

‘The Power of One’ photographic exhibition will remain on display at City Hall until Friday 24 November 2017.

Admission is free.

It’s difficult to convey the positivity, warmth and love in City Hall that day and in particular the convivial atmosphere during the evening session, which began with singing from the delightful John Ruskin School Choir, and which was peppered with numerous talks and Spoken Word from our co-hosts, including the unstoppable Rebecca Palmer and her team of POW’s, peripheral stem cell donors, sickle cell patients and closed by the fantastic London Community Gospel Choir, however we have tried to capture some of what happened on the day in this video.

We hope you enjoy. And share.

Thank you.

Team Margot
Together, saving lives

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Supported by Mayor of London



‘The Power of One’ speech at City Hall

by Yaser

Today is 30 October – these days, I have mixed feelings about the month of October:

Our daughter, Margot died on 27 October; that was 3 years ago on Friday…

Anthony Nolan died on 21 October 1979, aged 8 – in spite of his mothers efforts – his mother, Shirley was really something; she established the worlds first bone marrow register, in her son’s name, here in the UK.

8 October is the date that Daniel de Gale, Bev & Orin’s son passed away, aged 21. Daniel was the first black person in the UK to receive a stem cell transplant from an unrelated donor.

And on 7 October Margot was diagnosed with blood cancer; that’s the reason why 7 October is now the date of Team Margot’s annual stem cell and bone marrow Registration Day.

When Margot was diagnosed with leukaemia, our family had a very steep learning curve. I learned that your bone marrow is your body’s blood factory. And with Leukaemia, the blood factory malfunctions & produces white cells in the wrong proportions, far too many, and because it’s so busy working to produce these white cells, too few of the other cells are produced – cells that we need, to stay clinically well. For example, one of the tell tale signs of leukaemia is bruising, which occurs very easily, owing to a low platelet count.

When Doctor Ancliff (who is pictured in the exhibition) told Vicki & I on our first meeting a few hours after Margot arrived at GOSH, that Margot needed a BMT to stand the best chance of survival, I didn’t know what that was. Basically, the idea is that the patients bone marrow is removed & replaced with someone else’s. I use the analogy that it’s a bit like removing your computer operating system & then reinstalling it, if it crashes.

But to have a bone marrow transplant, you first need a bone marrow donor, someone who has the same tissue type as the patient. You need the right software.

And I quickly came to understand that people from the BAME communities are disadvantaged because there aren’t enough people registered as potential stem cell donors from those communities, to meet the patient demand.

Research undertaken by Anthony Nolan – the registry – tells us that white, Northern Europeans have a 69% chance of finding their ‘perfect match’, i.e. a 10/10 antigen match. By stark comparison, people from the BAME communities have only a 21% chance of finding an equivalent match.

And the odds are worse still if, like Margot, you’re mixed race.

So your race and ethnicity is vital, literally, when it comes to bone marrow transplants.

When Nadia & I initially came to City Hall to meet the Education and Youth Team’s Peer Outreach Workers (POWs) and they learned about this, it struck a chord; the POWs embraced Team Margot and the cause and really took it on board.

As I believe you’ll find out as the evening goes on, the POWs didn’t just turn up and have their photos taken for this exhibition, but they have each registered as potential stem cell donors and have personally taken this message home, into their communities.

But then, that’s what you’d expect from City Hall’s education and youth team POWs, who are amongst the brightest lights, and are their generations thought leaders and achievers. Like everyone else at Team Margot, they want to make a difference.

And with all that said, in a sense, it’s fitting that we are still in October, because October is Black History Month.

So really, that’s what The ‘Power of One’ photographic exhibition is all about: the impact that each of us can make as individuals, on one patient, one family, one community, oneself.

Dr Daniel McCloskey is here tonight; Dr McCloskey is a tissue typing guru of 35 years – and he always says, a patient only needs one donor. And you could be that donor.

So please join the register !

The photographs in the exhibition were taken by Cath Harries; this is Cath’s very first photographic exhibition ! Many congratulations & thank you for all your support Cath. And not just with this exhibition, but with all the other Team Margot work you do too.

You’ll note that the people in the photographs are all wearing a pink Team Margot wristband – the wristbands have become synonymous with Team Margot – and they are available for anyone to take from the pink box which will remain on display in the boutique coffee shop at the bottom of the ramp, until the end of the exhibition on Friday 24 November.
No donation is required – we simply ask that people ‘register, wear and share!’

The photographs are taken in front of icon London, featuring:
– POWs
– Stem cell donors: Raj, Ros & Katrina – Raj & Ros are with us tonight; alas Katrina is now living in New Zealand; as I say, Raj will be saying a few words later
– Sickle cell patient, Chanel Taylor – we primarily campaign for bone marrow donors but we also encourage blood & organ donation too… right now, there is an urgent need for more black blood donors, because they’re more likely to carry the much needed RO subtype of blood – the Ro subtype is simply blood with a certain combination of genes. Only 2% of our donors have it – so you’re going to hear from Chanel because she will be speaking later too
And also featured is Dr Phil Ancliff, Margot’s consultant

30 October will be remembered by me both for the launch of this event but also because we presented our education programme test of concept, which we call: giving to help others. The video part of the assembly presentation is playing on a loop, with subtitles – you can find out more, please go online and visit: givingtohelpothers.org

Everything we do as team margot is about seeking to educate, inspire & motivate people to become potential bone marrow donors, blood donors & organ donors. The philosophy of ‘Giving to help others’ is at the core of what Team Margot is all about: giving a part of ourselves to try and help save a life.

Margot’s story also touches upon organ donation. Because, a few weeks before Margot died, Vicki raised the issue with me of whether we might donate Margot’s organs. I was immediately horrified at the thought – Margot had been through so much; and yet after I had calmed down and considered the matter over the course of the next few days, on an even pulse, I did a complete u turn and realised that, of course, if we could, then we should donate Margot’s organs to help another small child in their time of need. As it turns out, there was some misinformation at the time, initially we understood that we could donate Margot’s heart valves and her corneas, but later learned that anyone with a haematological disorder is unable to donate their organs.

The point of me telling you that story is, irrespective of what your views are: TALK ABOUT DONATION WITH YOUR FAMILIES AND LOVED ONES, because ultimately it will help clarify and further understanding. It can take a bit of time to get your head around these issues. So don’t delay !

Lastly, the best thing about October occurred earlier this month, on Wednesday 4 October, when the Prime Minister announced that we would be “shifting the balance of presumption in favour of organ donation.”

This is a wonderful ‘once in a generation’ opportunity to actually make new laws & bring about systemic change to improve things, and it’s a fantastic that this is now firmly on the agenda, in a political climate that’s otherwise dominated by Brexit.

So please, let’s not waste it !

Previously, I was never really a fan of the opt out process, which Wales adopted a couple of years ago, because perhaps idealistically, I always wanted people to make a positive decision, a positive affirmation and say “I WANT to be a donor”.

But unfortunately people aren’t doing that in sufficient numbers & as my wife, Vicki has always said: if the system isn’t working, then change it !

So now, I’m loudly advocating for the ‘opt out’ system and all the possibilities that it offers.

As a parting comment, I’d just ask that each of you please consider the issues, decide how you feel about donation & what your wishes are and then discuss & share them with your loved ones; and please get involved with the consultation process and share your views.

I believe that each of us has an individual social responsibility – and that’s the power of one.

Thank you all so much again.

We hope you enjoy the evening.

 

Posted in: Journal
February 21, 2017

Team Margot Foundation – Review of Year Two (2016/17)

By
Margot, pre-diagnosis (June 2013)

Margot, pre-diagnosis (June 2013)

Dear Team Margot Supporter

My daughter, Margot died on 27 October 2014 and we registered Team Margot Foundation as a charity three months later, in her memory and to honour her legacy. Next month, the charity will be older than Margot ever was, however Margot remains our inspiration and our reason to believe.

Team Margot Foundation is a campaigning charity, with a grant giving capability. This second annual review of our activities is set out below in the following sections:

  1. Team Margot Foundation
  2. Background & ethos
  3. Our Vision & Goals
  4. Campaign work
  5. Grant Giving
  6. Summer 2014: Margot discovering that her dress had pockets

    Summer 2014: Margot discovering that her dress had pockets

    Financial Donations, Fundraising and use of funds

  7. Highlights of 2016

  1. Team Margot Foundation LOGOTeam Margot Foundation Registered Charity Number 1160236

Team Margot Foundation was set up as a Charitable Incorporated Organisation (CIO) on 29 January 2015. There are four trustees who meet regularly during the calendar year to govern and administer the charity. The trustees also set the strategy and agenda, which the trustees then deliver, assisted by fantastic supporters like you.

Team Margot Foundation has no employees nor paid advisers and accordingly there are no salaries, nor expenses paid by the charity. The trustees are unpaid, as are all the many other wonderful Team Margot volunteers and supporters around the world. Everyone at Team Margot strives to make a difference to the extent to which they are able – we want to help save the lives of all those people who, just like Margot and our family, never thought they’d need a bone marrow transplant.

The vast majority of the costs incurred by the charity are the hard costs of marketing and promotion, including Display boxcollateral such as envelopes, postcards, postage, wristbands, lapel pins, t-shirts and sporting kit.

We are happy to give these promotional items away, free of charge, because we value highly the lasting positive social impact that arises from the ensuing conversations and “word of mouth”. We know that there are beneficial knock-on effects and at times, incredible as it may sound, life saving outcomes.

Our charity accounts for this year will be filed in due course, however the significance of publishing this, our second annual review on 21 February, is that today is the date in 2014 when Margot received her bone marrow transplant.

THANK YOU so much for supporting the work we do and also for your various efforts and contributions. It all helps and we are hugely grateful. Together, we are making a difference and ultimately, saving lives.

  1. Background & ethos

14.01.14 SKY NEWSIn October 2013, Margot was diagnosed with an extremely rare bi-lineage leukaemia and needed a bone marrow transplant (also known as a stem cell transplant) to stand the best chance of survival. Family and friends came together as “Team Margot” to help find her a matching donor. Because of Margot’s mixed heritage, we were unable to target specific communities, so we launched a global appeal asking the public to do something amazing: register as potential stem cell donors and encourage others to do the same. We explained how such a selfless act could save a life and that it could be our daughter’s.

Team Margot’s efforts to date have resulted in tens of thousands of people registering as potential stem cell donors. Statistically, this means that during the next ten years, more than 500 people will now have the chance of a potentially life saving stem cell transplant.

Evening-Standard-photo-300x199During Margot’s appeal, we were careful not to confuse our public appeal for more potential bone marrow donors, with fundraising or financial donation.

In that sense, not much has changed. Our clear message remains: it’s all about registrations. And in particular, we underscore the urgent need for more registrations from the Black, Asian, mixed race and ethnic minorities.

Nevertheless, we realise that many people want to donate money and/or fundraise, regardless of whether they have registered: some because they’re ineligible to register, others because they’ve been touched or inspired by Margot’s story / the efforts of Team Margot. Team Margot Foundation gratefully accepts financial donations and funds raised by those who wish to support what we do.

team Margot signTo all our wonderful donors and fundraisers, THANK YOU so much again for your fabulous support.

Giving to help others

At the core of what Team Margot is about is the concept of “giving to help others”. When we say “giving”, in this context we don’t mean giving money; instead, we mean giving, literally, a part of ourselves for the sake of others, hopefully to help save a life.

Often, people don’t know how to give in this way and sometimes, the mere thought seems frightening and uneasy. Which is why we signpost where to go on teammargot.com, explain what’s involved and encourage people to register.

Team MargotOf course, giving in this way is a commitment, but as my wife and Margot’s mother, Vicki says: “if you’d be prepared to accept a donation of any kind, then you should be prepared to give also.”

We’d like more people to think about that.

More potential donors on the stem cell registers, mean more patient matches and ultimately, more lives being saved.

We are encouraged by the ongoing advances in medical science and we very much hope that a better cure for blood cancer will be established soon. However, for the foreseeable future, bone marrow / stem cell transplants represent the best chance of survival for many patients with blood cancer.

And you might be the only donor who can save a life.

Whilst our efforts are primarily directed towards increasing stem cell registrations, there is a virtuous knock-on effect that leads people to think about other giving, namely blood and platelet donation and also organ and end of life donation.

  1. Our Vision & Goals
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Team Margot works with all the UK organisations in the stem cell / bone marrow arena – we don’t mind how you choose to register, only that you do please register !

We imagine a world where every patient in need of a bone marrow transplant is confident of quickly finding a matching donor.

The size and potency of the UK stem cell registers is a matter of national interest

During 2016, we re-stated our wish to see the UK stem cell registers double in both size and potency. These are aspirations to see the total number of potential donors in the UK rise to 2.2 million (Margot was two years and two months old, when she passed away) and also a wish to increase the number of potential donors from the Black, Asian, mixed race and minority ethnic communities in order to meet demand.

Such colossal goals can only be met via collective and collaborative efforts and we very much regard this as a matter of national interest and therefore a target for the nation.

State of the nationThe attached bar chart illustrates the number of potential stem cell donors on the UK registers over the last 10 years.

The net total number of potential donors since 2014 is particularly encouraging in that the accelerated annual growth heralds improving public awareness, which we believe reflects a combination of factors, including: greater ease of registration following the switch from blood to saliva (Anthony Nolan) and buccal swab (DKMS UK) testing as the way of joining the registers, increased investment both from the organisations involved and also from the government since 2011, the launch of a new UK donor centre, DKMS UK (formerly Delete Blood Cancer UK) in 2013 again, investing in recruitment and typing of potential donors and also it’s broader recruitment criteria, extending the upper age limit to 55 years old.


The need to increase the quality of the registers

It’s more challenging to track progress regarding the potency or quality of the registers.

A key overarching point which is championed by Anthony Nolan is the importance of the retention of donors. Often, part of the problem is simply locating the potential donor after a match has been found. When people join the register, it’s so important that they understand the commitment that’s involved in their action. For example, it’s not uncommon for potential donors to forget to re-contact the register and update their records after moving home.

Anthony Nolan underscore how the register quality issue is further complicated when you consider that “only 60% of patients can find the best possible match from a stranger, and this drops dramatically to 20% if you’re a patient from a black, Asian or ethnic minority background.”

The odds are even worse if, like Margot, you’re mixed race.

Given that the vast majority of registered potential donors are of white European descent, the UK registers all seek to increase the proportion of people they recruit from black, Asian, mixed race and minority ethnic backgrounds, in order to increase the quality of their registers.

Margot & her cousin Louna doing the 'wiggly worm'

Margot & her cousin, Louna doing the ‘wiggly worm’

The generation of mixed cultures and genes

We know from Margot’s experience how hard it can be to find matches for people with mixed heritage. As Dr Daniel J. McCloskey, former Deputy Director of the Clinical Transplantation Laboratory at The Royal London Hospital, explains:

“Over the last century, with long distance travel and migration becoming commonplace together with changes to cultural barriers, there is an increase in mixed race relationships on a scale never seen before. Consequently there is an increase in children who become the next generation that are mixed race genetically. The ethnic minorities of today are one thing, but the ethnic minorities with additional mixed races are increasingly tomorrow’s problem.”

In other words, the practical reality is that this issue is likely to become ever more problematic. Our children’s children are the donors of the future and they will also be the generation of patients with the biggest problems to date in finding donor matches.

Understanding this helps hone our focus and the work required to further diversify the registers in order to improve patient outcomes and address the shocking inequality that currently exists.

  1. Campaign work
New Kings Road, London

‘I was there’ campaign roadside billboard

Wimagee thought that our first year as a charity was pretty spectacular, until our second year happened. Team Margot has run many campaigns and different events during the last 12 months. There has been such a fantastic amount of activity that at times, we struggle to keep up with what you’re doing !

Whilst we aren’t attempting to cover everything that has occurred in this review, we very much hope that the following overview will give you a flavour and that it is representative of all your superb work and activities.

We were pleased to work jointly on two campaigns with the NHS Blood and Transplant, specifically designed to appeal to the black, Asian, mixed race and minority ethnic communities.

Golden Ticket CampaignGT2

The most effective of these was what has become known as the ‘Golden Ticket’ campaign. Tens of thousands of Golden Tickets were emailed, printed and posted directly to existing blood donors from the target ethnic groups, shortly before their blood appointments, encouraging them to join the bone marrow register by donating an extra 5ml sample of blood at the end of their forthcoming session.

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click here or on either of the images above to see the NHS Blood and Transplant page relating to this joint campaign

The campaign launched in June 2016 and consistently beat predicted monthly targets, reaching the annual target after only 6 months. We understand the intention is for the NHSBT to re-run the ‘Golden Ticket’ campaign again at the beginning of the next financial year.

The Golden Ticket may already seem familiar - we used a version of it at our Parliamentary Reception in May - seen here on show with representatives from all the UK registers and the UK registry: Together, saving lives

Together, saving lives: with representatives from all the UK registers, registry & ACLT charity

Parliamentary Reception

We adopted the Golden Ticket theme in May 2016, at our first Parliamentary reception at the House of Commons Terrace. This event represented quite a big step forward for the charity in it’s quest to make a difference, in Westminster. The primary aim was to appeal to both the Lords imageand in particular the MPs to support Team Margot’s campaign efforts and help raise the priority and importance of stem cell donor registration in their constituencies.

The event was kindly hosted by Mark Tami MP and was a triumph; Jane Ellison MP, the then minister for Public Health attended to show her support and took the time to speak, alongside Judy Leden MBE, who only joined the register because of Margot’s appeal and later went on to actually donate her stem cells.

(L to R): Nadia, Adam Afriyie MP; Daley Thompson; Mark Tami MP; Yaser

(L to R): Margot’s auntie Nadia, Adam Afriyie MP; Daley Thompson; our host Mark Tami MP; me; Albert Owen MP

Overall, the event was well attended and supported by over 30 MP’s and Lords, stem cell and bone marrow donors, charities, health officials, Margot’s haematology consultant, as well as sporting legend, Daley Thompson, Alistair Petrie (actor: The Night Manager, Rogue One), Nick Ross (broadcaster) and Natalie Pinkham (Formula 1 presenter). Importantly, we enjoyed a healthy aftermath on
social media with many of the MP’s showing their support for Team Margot’s work within their constituencies.

Team Margot Medical Courier ServiceScreen Shot 2016-04-25 at

In Spring 2016, we were thrilled to announce an exciting new partnership, at KidZania London, the UK’s first educational entertainment experience where children aged four to fourteen can use real-life role play to learn life skills in a child-size City, built just for children.

Screen Shot 2016-04-25 at 18.33.03Together, we set up a dedicated activity within KidZania which educates children through real life role play on the importance of how ‘giving to help others’ can save a life: the Team Margot Medical Courier Service.

save a life todayBlending learning and reality, children are set a task to deliver everything from a blood bag (props donated by the NHS Blood and Transplant) to platelets and hard organs to understand how safe and speedy delivery can have lifesaving outcomes.

It’s not only children who are learning, we hope that their parents are too. Parents have access to the City (but not the tasks) so can watch the activities being performed and after completing the activity, each child receives a Team Margot wristband, which they can then take home, when they leave. It hopefully serves as a reminder of the importance of what they have done at KidZania and we hope it sparks conversation with adults in the real world.

sign up on tabletLive Your Life Day

At one of the bars on Live Your Life Day 2016

A registration desk at one of the bars on Live Your Life Day 2016

A week before Margot died, I wrote in a blog post that in spite of being really very unwell “it’s abundantly clear that Margot loves life and she wants to live!”

Less than three weeks later, my friend, Franca Knowles also passed away from a brain tumour. Franca was a remarkable person who had a real zest for life, coining the phrase “Live Your Life” which became a creed for the company she helped grow, Beds and Bars. In her memory, her husband, Keith declared Franca’s birthday (30 July ) “Live Your Life Day”, a day when company employees can take the day off to celebrate life with their families or in support of a charity.

Last year, Beds and Bars, along with many other companies in the hospitality industry, supported Team Margot Foundation and this year, they decided to repeat it all again and encourage more people to join the worldwide stem cell registers.

More generally, the hospitality industry continues to support Team Margot and the need for more potential donors within their venues and in response to requests, we produced a version of the ‘Light The Way’ video with subtitles, so that the video and it’s messages can still features on screens without the need for audio.

14192168_1038053302960389_3751366750676567241_n14192644_1038061129626273_395286674692434195_nTeam Margot Rowers

Team Margot Rowers first came together in September 2015 at The Great River Race, which was considered a ‘warm up’ event to The Celtic Challenge: an endurance event billed as “the longest true rowing race”, 95 miles across the Irish Sea.

Team Margot Rowers entered two boats (24 people) in The Celtic Challenge 2016, however whilst we were all fit and ready to compete (in itself, no mean feat!), the event was cancelled, owing to bad weather.

One of the rowers from the Aberystwyth team, Dr Maggie Collingborn (pictured with me) donated her peripheral stem cells last year having signed up via the Welsh Bone Marrow Donor Registry. Maggie has rowed the Celtic challenge 6 times ! winning the women's race twice and the mixed race once.

One of the rowers from the Aberystwyth team, Dr Maggie Collingborn donated her peripheral stem cells in 2015. Maggie has rowed the Celtic challenge 6 times ! winning the women’s race twice & the mixed race once.

Later in the evening I met another rower, Dorian Davies, who also donated his peripheral blood stem cells last year. Another amazing person who I feel so pleased to have met.

Still in Aberystwyth, “Word of mouth” led me to meet another rower, Dorian Davies, who also donated his peripheral blood stem cells in 2015

Regardless, a number of us regrouped and headed down to Aberystwyth where the race would have finished in early May, to take part in a competitive timed race around Aberystwyth harbour. Forty four people took part in the time trial and lots were drawn to make up eleven mixed teams. The four fastest teams were entered into the final, which included four Team Margot Rowers, Clare & James Howard-Vyse, Mike Smith and Martin Beaumont.

Ultimately, two Team Margot rowers, Mike and Martin found themselves in the winning boat with two experienced female rowers from the Arklow Ladies rowing team who have never lost the Celtic Challenge ! (pictured below); a fabulous achievement to have entered the Celtic Challenge for the first time and come away with a win.

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(L to R): WINNERS ! Martin Beaumont; Lisa Mellon; Mike Smith; Claire Alexander after the race

Team-Margot-Race3Team Margot Rowers yesterday at the end of The Great River RaceMoreover, Team Margot also won ‘The Presidents Cup’, an accolade awarded to the team that raised the most money for charity. Over £32,000 was raised by supporters of Team Margot Rowers, which we learned was more than 75% of the total funds raised by all teams combined. An astonishing achievement.

Team Margot Rowers have entered The Celtic Challenge 2017 and training is currently in full swing. Fingers crossed for better weather this year !

Thank you to all the Team Margot Rowers ! and also to everyone who has supported us and continues to do so.

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Some familiar faces turned out to watch (l to r): Maria Smith, Claire Bull, Sarah Bagnall & Margot's auntie, Charlotte (foreground: Poppy)

Some familiar faces turned out to watch (L to R): Maria Smith, Claire Bull, Sarah Bagnall & Margot’s auntie, Charlotte (foreground: Poppy)

IMG_4769Wednesbury Athletic v Walsall Legends compete for the Margot Martini Cup

For the second year running, Wednesbury Athletic FC competed for the Margot Martini Cup in an exhibition match, this time against the Walsall Legends, again to raise awareness and funds for Team Margot Foundation.

Hundreds turned out to watch the match which ended as a 4-4 draw; consequently Wednesbury Athletic FC hold on to the Margot Martini Cup.

We are most grateful to all those who bought tickets, donated raffle prizes and to everyone for coming to support. Thank you also to the Wednesbury Athletic team (who wear a Team Margot logo on their shirts every time they play) and in particular the organisers for making this happen in Margot’s memory.

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img_1451warm upTeam Margot Ten Miler

The Team Margot Ten Miler took place on Sunday 2 October 2016.

The course was essentially one lap of the perimeter of Richmond park, with a little extra loop at the end, just to get our fitness levels up ! 

We asked that all runners be registered on the bone marrow register, if eligible. 

THANK YOU again to everyone involved with the Team Margot Ten Miler, our fantastic army of volunteers, the St John’s Ambulance crew, ResultsBase and of course the runners themselves !

Team Margot USA support for DKMS PSA campaigns on TV resulted in invitation to NYSE

Christian Drobnyk, Team Margot USA (front right) was invited by DKMS US to the ringing of the Opening Bell at the New York Stock Exchange in recognition of his support for their TV advertising campaigns

Gavin Sandford embarked upon a desert run of 310 miles in Morocco. It’s equivalent to running Marathon de Sables TWICE and he’s doing it in support of Team Margot. Morocco doesn’t have a bone marrow register

Gavin Sandford embarked on a desert run of 310 miles in Morocco, equivalent to running the Marathon de Sables TWICE in support of Team Margot. Morocco doesn’t have a bone marrow register

In our last review, we outlined three perennial initiatives, which we felt could become the mainstay of our campaign work. During the course of the last 12 months, following further research and consideration, we took the decision to whittle this down and focus our energies on the following two:

i. Education programme

The challenge with increasing the quality of the various bone marrow registers (and blood and organ registers too) by reaching out to those with BAME (Black Asian Minority Ethnic) and mixed race heritage is that these communities are the least engaged.

There are many organisations and community groups working hard to improve this situation and whilst there is good progress being made, the overall cut through and engagement remains a challenge. Virtually all of this good work is aimed at adults (16+ years of age).

Tower House Junior School made Team Margot their charity of the year

Tower House Junior School named Team Margot as their charity of the year

Education and awareness for younger children

educationWe believe that there’s an opportunity to take a longer-term approach to this issue through education, targeted at children of primary school ages. If we can reach out to children whilst their minds are still relatively open and make them conscious and aware of how “giving to help others” can help save someone’s life, then we believe that the UK registers will make meaningful strides towards addressing these issues, in the longer term. This is a concept that already has widespread and growing support.

Supporting behavioural change through a tailored education programme

careers week

KidZania tell us that one of the teachers that attended our recent Team Margot presentation in the theatre within the City, walked out after the talk and said “Now THAT’S an education!”

Working with children of primary school age, their teachers, parents and carers, our education programme will create and develop a dialogue for the issue of donation to be discussed in a safe and secure setting that is designed to engage young people at an appropriate level. The overarching objective in the longer term will be that greater engagement and awareness will result in an increase of the number and proportion of people from BAME communities becoming donors.

The programme will therefore develop the dialogue, tools and methodologies to an education programme that will:

  1. result in the children themselves being more informed of the good that being a donor can bring, how they can become a donor when they grow up and have reached the age of consent. The programme will aim to promote being a donor as the norm, rather than the exception
  1. have the potential to be a type of peer educator programme when children, parents, teachers and carers will share what they have learned and this will have a positive influence on their families and loved ones, encouraging more of them to engage and act; this will again benefit all forms of donation and help increase the diversity of the donor base.

We are currently in the process of identifying and recruiting the right people to help research, design and develop our education programme and run the pilot to deliver proof of concept and, hopefully, lead to the growth of the programme to cover a wider geographical area in schools with a high percentage of pupil diversity. Ultimately, it is our intention for our education programme to form part of the mandatory and statutory curriculum, such that it can be rolled out to all primary schools, nationwide.

Team Margot on the iconic Piccadilly Lights

Team Margot on the iconic Piccadilly Lights in London

With Daniella Bernard & Grace Hynds who jointly wrote "Light The Way" at an event we held at KidZania London for over 650 people, including families from Great Ormond Street Hospital, Shooting Stars Chase Hospice & Momentum

James, Nadia and I with Daniella Bernard & Grace Hynds who jointly wrote “Light The Way” at an event we held in KidZania London attended by almost 650 people, including families from Great Ormond Street Hospital, Shooting Stars Chase Hospice & Momentum

ii. Team Margot Stem Cell and Bone Marrow Registration Day

Our inaugural “Awareness” day took place on 7 October 2015, on the second anniversary of Margot’s blood cancer diagnosis. In 2016, we renamed it a “Registration” day (because we are learning !) and marked the occasion by launching a music video, after two final year students at Elstree University Technical College, wrote a song inspired by Margot, called “Light The Way”.

Music has the ability to engage and motivate large numbers of people and we remain hopeful that “Light The Way” will do just that.

It’s difficult to convey the overwhelming sense of accomplishment and the heart-warming feeling and goodwill that Team Margot’s activities generated, however I hope that the accompanying video’s and photographs will help provide you with a glimpse into the sheer grunt work, dedication and unbelievable support that was enjoyed in the lead up to, on and following our Registration Day on 7 October 2016.

fullsizerenderWe estimate that we received around £1 million in combined value terms for all the advertising and media received, which included:

  • Over 135 billboards in roadside locations around the UK
  • three mobile promotions kiosks in London mainline railway stations: Charing Cross, Kings Cross and Paddington (with ‘beacon’ technology), working in conjunction with DKMS UK
  • The Curve at London’s Piccadilly Lights
  • Exclusive use of KidZania London (636 people attended)
  • Thank you to DKMS & all our volunteers who manned the Mobile Promotions Kiosks in Kings Cross, Paddington & Charing Cross stations on 7 October

    Thank you to DKMS & all our volunteers who manned the Mobile Promotions Kiosks in Kings Cross, Paddington & Charing Cross stations

    Channel 5 News (National TV) & ITV Central (Regional TV)

  • Radio Jackie (SW London & North Surrey), Signal 107 (Wolverhampton), Radio West Midlands, BBC WM 95.6, WFM 97.2
  • Online advertising across The Daily Mail Group, Express, Telegraph and Metro
  • AOL social seeding amplification and distribution across all AOL platforms (includes Huffington Post, Yahoo, MSN) in US and UK; Mumsnet, Netmums, Bubele and East Sheen Village
  • Cinema: Olympic, London played ‘Light The Way’ teaser video in lead up to 7 October, plus support from Curzon Ripon
  • Direct email campaign to every pub and hotel in the country (330,000 in total), plus support from trade bodies and hospitality companies
  • National print media advertising campaign: Daily Mail, Telegraph, Guardian, Metro, Observer and Sunday Mail
  • Newspaper print & online advertising campaign

    Newspaper print & online advertising campaign

    DK

    Betina Sorensen, Danish Stem Cell Donor Registry and Lars Raae, Team Margot Denmark

    Regional print media advertising campaign: Times in Hendon & Finchley, Barnet & Potters Bar, Edgware & Mill Hill, Boreham and Elstree

  • Various trade media press support from supporters within the following industries: hospitality, financial, music, education, political, Travel (TFL) and the stem cell communities
  • ‘Light The Way’ launched on Spotify, Apple Music, SoundCloud, Deezer and other music streaming platforms
  • ‘Light The Way’ audio files available to commercial radio stations via the BBC Desktop Jukebox, ITV Hub and I Like Music and played on ‘virtual jukeboxes’ in pubs nationwide
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Donor Registration Event, Des Moines, Iowa, USA

International Activity

  • Donor Recruitment Event, Brooklyn Park, New York, USA

    Donor Recruitment Event, Brooklyn Park, New York, USA

    Team Margot Denmark – Danish Bone Marrow Registry recognises 7 October as
    “Margot Day”

  • Team Margot Poland – donor registration event in Lomza, Poland
  • Team Margot USA – donor registration events held at:

Brooklyn Fall Festival, New York, USA

Des Moines, IA, USA

Donor Registration Event in Lomza, Poland

Donor Registration Event in Lomza, Poland

All the above support and activity was generously donated to Team Margot Foundation.

And of course, none of this would have worked were it not offered up, organised and attended by all the wonderful Team Margot volunteers.

Quite extraordinary.



Channel 5 News

BBC Radio WM

ITV Central

  1. Grant Giving by Team Margot Foundation

cubby hole

Margot was at Great Ormond Street Hospital for several months and we know how hard life can be when caring for a sick child. A 2016 study highlights the destructive financial impact by reporting that a third of cancer survivors are left in debt due to their treatment, inability to work or other factors and 3% are bankrupted by their illness.

During the last 12 months, we made 35 one-off grants of £1,000 to families caring for child cancer patients. These families mainly stem from the haematology wards at Great Ormond Street Hospital, but also through a charity that’s based at what was Margot’s local hospital in Kingston, called Momentum.

Bianca Effemey, founder and CEO of Momentum wrote to us earlier this year:

The proportion of total funds and also the number of one-off £1,000 grants given to families caring for child cancer patients has increased this year, which reflects the wishes of the trustees

The proportion of total funds and also the number of one-off £1,000 grants given to families caring for child cancer patients has increased this year, which reflects the wishes of the trustees

“I can’t even put into words what a wonderful gift Team Margot Foundation is to the families. At first I was not sure how this could be offered or how families would react. I want you to know that I see some of the stress instantly ease from these poor families faces as so often the money is such an issue and one does not like to talk about that as they feel it is wrong to express that on top of everything else that’s happening. You have helped so many people from this and it’s so private. Thank you. You donated funds to a couple of families who have since lost their child; they spoke to me and said it made such a difference and just relieved some of the pressure.”

We also recently received the following feedback from Barbara Inglin, a CLIC Sargent social worker based at Great Ormond Street Hospital:

“The support Team Margot provides is just brilliant because it is sensitive to the fact that when a child is seriously ill, families can have so many different needs and it can be difficult for them to identify the ‘priority’ need; the grants you give provide them with some much needed flexibility and choice! Thank you!”

The trustees are pleased to be making these one-off grants in the belief that they help in some small way.

We are currently setting up similar arrangements with Birmingham Children’s Hospital and hopefully at Bristol Royal Hospital for Children, working with the Anthony Nolan Patient Services Team, to enable these grants to reach more families besides.

In addition, we made two further grants:

Vicki & I with Dr Jasper de Boer (L) and Dr Owen Williams

Vicki & I with Dr Jasper de Boer (L) and Dr Owen Williams at UCL

with Dr Owen Williams (L) and Margot's consultant Dr Phil Ancliff at our Parliamentary Reception

with Dr Owen Williams (L) and Margot’s haematology consultant, Dr Phil Ancliff (who is also a Team Margot Rower) at our Parliamentary Reception

Firstly, £5,000 towards a leukaemia research project run by UCL in collaboration with Great Ormond Street Children’s Charity. This follows a £60,000 Team Margot donation in 2014, prior to the formation of Team Margot Foundation.

In infant leukaemia, 50% of babies will die in spite of very aggressive chemotherapy. Excitingly, the team has discovered a potential new targeted treatment. Research has shown that around 8 in 10 cases of infant acute lymphoblastic leukaemias (ALL) are driven by MLL (mixed lineage leukaemia) fusion proteins, which is produced inside the cancer cell. Guided by this understanding, Dr Jasper de Boer and his team has found that one drug in particular was extremely effective at destroying MLL fusion proteins in leukaemia cells in the lab and, crucially, halted their growth, killing the leaukaemic stem cells. These are the cells from which the leukaemia grows and are resistant to conventional chemotherapeutic drugs.

Dr de Boer’s current priority is optimising the drug formulation, before being able to commence a clinical trial in humans, however, there is already good evidence that this drug is safe to use in humans, as it has been on the market for many years. We will continue to track progress and update, as matters unfold.

Secondly, a donation of £10,000 was made to Shooting Star Chase, the leading children’s hospice charity that provided a place for Margot’s body to rest, prior to her funeral.

distractedFinally, Momentum report that our 2015/16 grant of £5,100 helped eight families receive psychological services. Of the eight families:

Two families are dealing with the sudden death of a child

One family is dealing with bereavement following an illness

Five families have a child with a very challenging health diagnosis: such as relapse of a previous condition, a very poor diagnosis or introduction of palliative care to their child

The grants made by Team Margot Foundation are only possible because of you and your generosity. On behalf of everyone involved at Team Margot and in particular the grant recipients, thank you.

  1. Financial Donations, Fundraising and use of funds

As at 29 January 2017, the total fundraising and cash donations received during the last 12 months amounted to £99,640.06, which is up almost 17% on last year’s total. This is all the more incredible given that the charity doesn’t actively fundraise or publicly seek financial donations.

Team Margot Foundation has two bank accounts at Charities Aid Foundation Bank (CAF Bank):

  1. working account– this account received £28,606.62 during the course of the last 12 months. It was originally funded via donations from our family (who remain the underwriters) but is currently supported by generous corporate donors and private individuals who contribute to support the marketing and promotional costs of running the charity. All such costs are paid from this account. The trustees have budgeted for the year ahead and will monitor and review the cash balance. Any funds that are surplus to requirements may be allocated as grant money.
  2. Donnafundraising account– this account received £71,033.44 (including £94.17 of interest) during the course of this year from generous donations and fundraising activity by the general public. Notably, this includes £32,032.25 raised by Team Margot Rowers in respect of the Celtic Challenge. 100% of this money will be granted to the wonderful people and charities we support.

keystoneThe reason for having two bank accounts stems from the trustees wish to separate publicly raised and donated funds, which are intended to be given away as grants, from any specific donations received by Team Margot Foundation for marketing and promotional purposes.

The trustees feel this is an important distinction, which enables us to state that every penny raised or donated by the public goes to the people and projects close to our hearts.

It is the intention of the trustees to maintain this structure and to continue to operate in this way.

7. 2016/17 Highlights

Statistically, we are told by DKMS UK that over the next 10 years there are going to be more than 500 people who will now receive a potentially life saving bone marrow transplant, thanks to the work of Team Margot. On average, that’s about one a week ! although for the most part, we don’t get to hear about these donations, which is why we love learning about them when people are willing to share their experiences.

Maria (r) & her sister Marcia who volunteered to help out

Maria (r) & her sister Marcia who volunteered to help out with the donor registration event

Screen Shot 2017-02-19 at 23.25.09James Payne

In March 2015, Maria Smith a Team Margot volunteer held a donor registration event at her place of work, in memory of Margot, to encourage people to join the stem cell register.  One of her work colleagues, James Payne signed up that day and has since gone on to donate his stem cells during the last 12 months. James told us:

“On the day of my donation I was asked to turn up bright and early at 8am to allow enough time for them to collect enough stem cells. I had a needle in one arm where the blood was removed, it was then run through a machine which separated my stem cells from my blood and then returned the blood to me through a needle in my other arm. My blood also had an anti-coagulant added to it to make sure my blood didn’t start clotting and disrupting the donation.

maria-smith4-400x300I was attached to the machine until about 1pm. I was quite comfortable, but it was a bit awkward to do anything, as I couldn’t bend either arm much.  After my donation I felt a little weak and tired, and my arms were slightly sore where the needles had been, but no more than having any other injection. These feelings passed after having a day’s rest and I was back to work straight away feeling none the worse for wear!”

Read more about James’ experience here.

Rajbinder, donating her peripheral blood stem cells

Rajbinder, donating her peripheral blood stem cells

Rajbinder Kullar

“If it wasn’t for Margot, I would have no idea about blood cancer and stem cell transplants.

Rajbinder registered as a potential stem cell donor in May 2014 at a fashion show run by Diffusion at Tettenhall College in Wolverhampton

Rajbinder registered as a potential stem cell donor in May 2014 at a fashion show run by Diffusion & Margot’s auntie, Charlotte at Tettenhall College in Wolverhampton

I held Margot in my head whilst going through the donation, which made everything easier. Because of her, I have given a 24 year old Indian boy a second chance at life. I’m told he is 25KG heavier than me, so in my case, I needed to donate on two consecutive days so that they could collect sufficient to help save him.

I experienced some side effects (I was told to expect this) but was completely back to normal 48 hours later.

Donating was the most amazing feeling I’ll ever experience in my life and I would absolutely do it all over again.”

donors

(L to R): Judy Leden, peripheral stem cell donor; Nadia; me; Katrina Krishnan Doyle, bone marrow donor

Other Team Margot stem cell & bone marrow donor stories – click below to read more:

Ros Mafi (peripheral stem cell donor)

Judy Leden MBE (peripheral stem cell donor)

Katrina Krishnan Doyle (bone marrow donor)

YplAlexandra Casley (peripheral stem cell donor)

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pete andrews

(L to R): Pete Andrews, HLA-identical sibling donor; Daley Thompson

 

ros maafi

Ros Maafi, peripheral stem cell donor

Alexandra Caseley

Alexandra Caseley, peripheral stem cell donor

Team Margot primarily seeks to inspire people to join the stem cell registers, but we also encourage people to donate blood and to join the organ register too:


I have avoided trying to name all our fantastic volunteers and supporters here because it’s simply not possible to do justice to the many wonderful people, companies, schools and communities who continue to support Team Margot, but from the bottom of my heart, T H A N K   Y O U  to all involved with Team Margot (you know who you are !) and in particular a brief but special mention to those who make one-off or regular financial contributions to Team Margot Foundation.

Thank you also to the NHS Blood and Transplant, the Welsh Bone Marrow Donor RegistryAnthony Nolan and DKMS UK – these organisations enable us all to join a register as potential bone marrow donors. And whilst it needn’t cost the potential donor any money to join, this is only possible thanks to the excellent work by these government departments and charities & their amazing fundraising efforts.

Team Margot Foundation Trustees (L to R): family friend, James Cuthbertson; Margot's auntie Charlotte Hathaway; Margot's father Yaser and auntie Nadia

Team Margot Foundation Trustees (L to R): family friend, James Cuthbertson; Margot’s auntie Charlotte Hathaway; me and Margot’s auntie Nadia

vicki kissing margot

Vicki with Margot, shortly before an operation at Great Ormond Street Hospital, a few weeks before Margot passed away

I’d also like to take this opportunity to thank all the trustees of Team Margot Foundation: Margot’s auntie Charlotte and James for everything that you do and in particular my sister and Margot’s auntie Nadia who brings so much to the table and complements me, making up for my shortcomings.

Lastly, I also wish to thank my wife, Vicki for her love, support and compassion and also our boys, Oscar (9) & Rufus (8) for their understanding; being in our situation is challenging and it impacts each of us in different ways. And of course, Digby (19 months) for the joy he brings; Margot would have loved her little brother.

We all miss you, Margot. x

Yaser, Margot’s father

Trustee & CEO, Team Margot Foundation
Registered Charity Number: 1160236

 

 

FIND OUT HOW YOU CAN SAVE A LIFE.

WHAT’S INVOLVED WITH A STEM CELL OR BONE MARROW DONATION
WHAT’S THE DIFFERENCE BETWEEN A STEM CELL TRANSPLANT AND A BONE MARROW TRANSPLANT
HOW TO REGISTER
BECOME A BLOOD DONOR
REGISTER AS AN ORGAN DONOR

TM - Picaddily Margot
Supported by Mayor of London

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