Team Margot campaigns for more people to join the worldwide registers as potential bone marrow/stem cell donors, especially people from ethnic minorities or those with a mixed heritage. In 2013, 14-month-old Margot
Margot had an extremely rare dual lineage Leukaemia with both Acute Lymphoblastic Leukaemia (ALL) & Acute Myeloid Leukaemia (AML). The consultant haematologist told us that he had only seen 3 such cases in 10 years.
Our partners at NHS Blood and Transplant have made this cool video with us, explaining ways how you, your friends and families can give to help others. Please watch this video
Wow. Humphrey woke me up & now I can’t sleep. Just stumbled into this tweet & re-read my blog post + extract from Margot’s journal, September 2014. Brings it all back & then💥… the video of Margot “circuit training”. The power of hope is incredible. #HopeHelps #missyouMargot x
Looking back, I was desperately clinging on to hope… http://www.teammargot.com/when-margots-white-cell-count-was-low-and-the-of-donor-cells-present-in-her-blood-was-rising/ #register4margot #togethersavinglives
I registered as a donor in January 2014 when I heard Margot’s story from a friend. I couldn’t believe it was so easy as to swab your mouth, and then you were registered as a donor. And I couldn’t believe that children as young as Margot were suffering with illnesses like this, when a transplant could make all the difference.
I didn’t think anymore of it, until March 2018 when DKMS contacted me as I had been matched to someone needing a stem cell transplant.
I couldn’t believe it, I never actually thought I would ever be a match for anyone! When DKMS asked if I was prepared to go through with the donation, I didn’t hesitate. How can you say no, when you know you might be saving someone’s life!?
The process started with a trip to the doctors for some blood tests, which all came back fine. I then needed to go to London for my “MOT” as I called it, to check that I was healthy and fit enough to go through the procedure. Typically on the day in June when I was due to go to London, I had a stinking cold! I was so worried I wouldn’t be able to go, but after a phone call to DKMS, I was on the train and London bound. Not feeling 100%, I was pleased to get the all clear, and so my donation was set for a later time.
DKMS explained everything every step of the way, and I knew if I needed to ask anything I could give them a call. The procedure involved having GCFS injections for the 4 days leading up to the donation, to boost my stem cells. I was told of the side effects, and apart from a headache and some back ache, I was fine.
My Mum took the time off work and came with me. So we were back to London for an overnight stay, all ready for the donation the next day.
I donated for 4 hours, and although it was a bit uncomfortable, and it made me feel pretty tired, I couldn’t help but feel so grateful that I was heathy enough to go through something like this.
Unfortunately after they’d tested some of the stem cells, they didn’t quite have enough for a full donation, and so we needed to stay another night in London, and go through the same procedure again! So I was given another GCFS injection and was told to come back again the next day.
All was not lost, as we managed to see a show on the evening!
Unfortunately when I woke up the next day I had terrible diarrhoea! I couldn’t believe it. I was really concerned that I wouldn’t be able to donate. Being stuck to a bed for 4 hours when you can’t really use the loo, wasn’t very appealing at that point!! I managed to get myself to the hospital, and the nurse put me at ease straight away. She said it was probably due to the levels of GCFS I’d had as I’d needed the extra dose. A couple of Imodium and I was good to go, although feeling slightly nervous!! All went fine though, and I only needed to donate for 3 hours in the end. And that was that! We were back on the train and on our way home.
A few weeks later DKMS phoned me to let me know that my donation was sent to a 60 year old woman in Finland! Wow, my stem cells flew all the way to Finland! I couldn’t believe it.
I am able to receive updates at 3 months, 6 months, 12 months and 24 months. I am also able to correspond with my patient anonymously if I want to. I was going to wait for the first update, and then write to them and ask how they are doing. I really hope that my donation makes a difference.
If anyone reading this is thinking whether they should sign up or not, please do it! Such a relatively simple process, and you could potentially save someone’s life.
I’d like to think that if someone I loved was ill and needed a transplant, there was someone like me out there, willing to put themselves out just a tiny bit, for such an important, potentially life changing reason.
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
We set up Team Margot Foundation in January 2015, in memory of my daughter, Margot and to honour her legacy. A year earlier, Margot’s patient appeal for a bone marrow donor saw over 50,000 people in the UK alone requesting swab kits online, in order that they could join the register as potential donors. Margot’s appeal was covered by the media in thirteen countries and because Team Margot had built a following, we simply continued campaigning after Margot’s transplant, for the greater good.
Margot’s mixed heritage was the key reason we were unable to find her ‘perfect match’ and we soon learned about the stark disparity between the 69% chance of a White Northern European blood cancer patient finding their 10/10 antigen match and the 21% chance of a Black, Asian or Minority Ethnic patient finding their equivalent match.
It turns out that the odds are worse still if, like Margot, you’re mixed race.
This under-representation of Black, Asian, Mixed Race and Minority Ethnic (BAME) donors on the worldwide bone marrow / stem cell registers is also the prevalent issue when it comes to the need for more blood and organ donors too.
Our work has revealed that Margot’s story resonates with children of primary school ages and that young children are able to recall salient details remarkably well.
We believe that tailored education and awareness for children of primary school ages (5-11) will ultimately result in two key outcomes:
We first trialled our assembly presentation ‘test of concept’ at the start of October 2017 and officially launched the programme and our initial findings later that month, working with the Education and Youth Team, at City Hall in London. The presentation materials, including powerpoint slides, teacher notes and short animated video are all available to use for free via givingtohelpothers.org
We recognise the need for our education and awareness programme to reach out to teachers, teaching staff and also parents and the wider school communities outside the classrooms, in addition to the children themselves.
During the course of the last few weeks, the ‘Giving to help others’ assembly presentation has been piloted in several primary schools within the London borough of Southwark. We have attended these assemblies, strictly as observers and are awaiting the analysis of the feedback forms received from 725 pupils and 22 teachers.
Thank you again to everyone involved. It’s a very fluid and iterative process, however I’m pleased to tell you that our learnings are already helping to inform next steps and how best to assess and encourage greater social impact, in order that more people sign up as potential stem cell donors, give blood and register as organ donors.
It took a loved one for me to change my own attitude and behaviour towards donation and I very much hope that others will embrace the culture and philosophy of ‘Giving to help others’, without first having to suffer their own family tragedy.
Together, saving lives
Dear Team Margot Supporter
My daughter, Margot died on 27 October 2014, aged two years and two months and we registered Team Margot Foundation as a charity three months later, in her memory and to honour her legacy. Margot’s story remains as relevant today as it did when she was initially diagnosed with blood cancer and our family is hugely grateful to the tens of thousands of people in the UK and more beyond who registered as potential stem cell donors in response to Margot’s appeal and to all those who have and continue to support the cause and help spread the word.
Four years ago this week, Margot received her bone marrow transplant, thanks to an anonymous male donor from Germany. Whilst the transplant didn’t succeed, our family is nevertheless unspeakably grateful to her anonymous bone marrow donor for his gift of hope and the extra time we enjoyed with Margot.
We mark this time each year by reviewing the charity’s activities.
Team Margot Foundation is a campaigning charity, with a grant giving capability and this third annual review of activities is set out below in the following sections:
TEAM 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 they then deliver, assisted by fantastic supporters like you.
The charity 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.
Team Margot Foundation has no employees and accordingly there are no salaries or expenses paid by the charity, however this year, for the first time, the charity has engaged external consultants to help deliver our strategic aims (see below: ‘Giving To Help Others’ Education Programme).
The costs incurred by the charity include the hard costs of marketing and promotion, including collateral such as envelopes, postcards, postage, wristbands, lapel pins, t-shirts and sporting kit.
We are happy to give these promotional items away to our supporters, 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.
The formal charity accounts for the calendar year 2017 will be filed in due course,
however what follows is a review of activities during the period from 29 January 2017 to 28 January 2018, which is in keeping with previous reviews of the first two years.
We have also taken into account recommendations following a peer review with Neil Robertson, Chair of Trustees at Hope for Children (see: hope-for-children.org) which was conducted as a matter of good practise. It was noted that Team Margot Foundation’s affairs were generally in good order; a few minor points were made and these have since been addressed.
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, as are the beneficiaries of our work.
Together, we are making a difference and ultimately, saving lives.
In 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 over 40,000 people registering as potential stem cell donors in the UK alone. Statistically, this means that more than 500 people will now have the chance of a potentially life saving stem cell transplant.
During 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 message remains clear: it’s all about registrations.
And in particular, we underscore the urgent need for more registrations from the Black, Asian, mixed race and minority ethnic communities (BAME) across all forms of donation.
This includes not only stem cell / bone marrow sign ups (the primary focus of the charity) but also blood, platelets and organs. This is partly because all these types of donation were relevant to Margot, but largely because the need for more donors is greatest within the BAME communities.
Margot’s mixed heritage was the primary reason it wasn’t possible to find her ‘perfect match’.
To read more about the challenges relating to our ‘generation of mixed cultures and genes’, click here.
We imagine a world where every patient in need of a bone marrow transplant is confident of quickly finding a matching donor. And that every requirement for blood, platelet or organ donation can be met.
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, the bone marrow / stem cell transplant represents the best chance of survival for many patients with blood cancer.
Similarly, blood, platelet and organ donations are urgently required in order to keep patients clinically well and to help save lives.
A patient only needs one donor and you could be that donor. Moreover, as is often the case, you might be the only one who can save a life.
We have continued to hone our focus on the concept that’s core to Team Margot’s work, namely: ‘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. That’s why we signpost where to go on teammargot.com, explain what’s involved and encourage people to register. Of 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 donors and potential donors on the registers, mean more patient matches and ultimately, more lives being saved.
We believe that children are our future
The first Team Margot school presentations took place in early 2015 and quite by chance, we discovered that Margot’s story resonated with primary school aged children. Initially, we were surprised at how well these young children were able to recall the salient details and facts and how, once they were given permission and felt empowered, they could positively influence their parents to physically attend our donor registration events some days later.
By the end of that same year it had become increasingly clear to us that educating, motivating and inspiring primary school children presented a real opportunity for positive change. Existing donor recruitment initiatives are mainly focussed on older children, sixth formers, university students and adults. No one was talking to younger children. We felt certain that we were on to something given the work we had undertaken in primary schools, but we only had anecdotal evidence and a strong ‘hunch’ that a few words now, can make a lifetime of difference.
With this in mind, our trustees decided upon a more structured and deliberate approach in respect of the running of the charity, given our limited time and resources. 2016 was a transitional period, we started to reduce the time we were spending on smaller / ad hoc events and instead began spending more time on planning and executing a new strategy, geared towards primary school education, that could scale.
In early 2017, we interviewed a number of different firms and eventually engaged an eclectic mix of really fabulous complementary agencies, namely Edcoms, Koop and Munro & Forster to help us create and develop our concept. Working in partnership with NHS Blood and Transplant we created an assembly presentation, aimed specifically at primary schools where the students are predominantly from Black, Asian, Mixed Race and Minority Ethnic communities.
We then ran a test of concept and documented our findings. The assembly presentation is the first module of what we call the ‘Giving to help others’ education programme.
‘Giving to help others’ education programme
The ‘Giving to help others’ education programme seeks to promote behavioural change through tailored, age appropriate content for children between 5-11 years of age.
The intention is that donation becomes more accepted as the norm, rather than the exception and also that children will talk to & encourage their families and loved ones to consider donation of all kinds.
The school assembly takes approximately 25 minutes to deliver and the online pack comprises:
• Feedback & consent forms
All the above information is available to download for free on: givingtohelpothers.org
The information is also available on the NHS Blood and Transplant Promoting Donation Hub.
On Monday 30 October 2017, we were delighted to launch our education programme, jointly with NHS Blood and Transplant at City Hall in London.
On our panel of speakers were Jesse Panda (13) from Oasis Academy Waterloo who delivered spoken word, Elisha Rankin-Hart (13) from Queens Park Community School who spoke about her father’s kidney transplant and her perspective of that experience, Becs Palmer who heads up the fantastic Education and Youth team’s Peer Outreach Workers and Josie Todd, Project Manager for London Curriculum, Greater London Authority.
We presented our findings, following our initial test of concept at Dog Kennel Hill Primary School, in Camberwell, London, where it was fantastic for us to see the assembly being delivered, first hand.
We were also privileged to speak to some of the pupils afterwards.
It was an invaluable learning experience and overall, we were thrilled to receive very positive feedback from teachers, teaching assistants and most importantly, the pupils alike.
As a result of this initial pilot, we made tweaks to the content & delivery of the assembly presentation pack and will be beginning a more extensive pilot programme over the course of the next few months, to further trial and monitor social impact and importantly, registrations. Our primary focus will be on the London Borough of Southwark for various good reasons, not least because over 60% of people in Southwark under 30 years of age are BAME.
The ‘Giving to help others’ education programme is in part ‘powered by’ Team Margot, however there are many other collaborating parties besides and consequently it will be operated in a very different, more commercial way from Team Margot Foundation, which is an unpaid volunteer charity.
Our initial aim is to raise around £1 million to fund the programme development and to roll out over the next 5 years, enabling us to put formal structures and processes in place, in order to operate sustainably and scale. To find out more, please email me.
A special thank you to Tendai, for all your help and valuable guidance behind the scenes, which is hugely appreciated.
“The Power of One”
On 30 October, we also launched a photographic exhibition called “The Power of One”, again working in conjunction with the Peer Outreach Workers (POWs) from City Hall’s Education and Youth Team.
We can’t all save the whole world, but by taking a simple step each of us can make a vital difference to one person, one family, one life. Our wish was that people would take inspiration from the actions of those featured in this exhibition & take action too by registering as a potential stem cell / bone marrow donor.
The exhibition featured a series of portraits by photographer Cath Harries of the POWs, people who registered because of Margot & the work of Team Margot and then went on to actually donate their stem cells or bone marrow, sickle cell patient Chanel Taylor and Margot’s Consultant, Head of Haematology at Great Ormond Street Hospital, Dr Phil Ancliff. ‘The Power of One’ photographic exhibition remained on display in the best exhibition space at City Hall for 5 weeks, until the end of November 2017.
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.
And thanks to our friends at ACLT who ran a registration desk throughout, 12 people were registered on the night.
We have tried to capture some of what happened that evening in these photos and videos.
As I trawl through all the information in preparation to write this annual review, I am reminded of just how much has happened this year ! It’s a massive work effort and as with previous reviews, the intention isn’t to try and cover everything that has occurred, but I very much hope that this summary will give you a flavour and that it is representative of all the superb work and activity that has taken place.
So, in no particular order…
World’s First Double Marathon Des Sables
April 2017 – This video makes for compelling viewing; it chronicles an extraordinary self-imposed running challenge across the desert in Morocco by Gavin Sandford, who ran 150 miles alone, before then joining and completing the Marathon Des Sables (itself another 156+ miles).
Gavin finished last year’s Marathon Des Sables in 187th place, there being more than 1,100 participants.
Gavin ran for Team Margot, as well as two other charities: BLESMA and Queen Elizabeth Hospital Birmingham, raising over £9,500 in all. Astonishing.
Morocco is one of many countries that doesn’t have a bone marrow register.
May 2017 – Margot’s auntie Nadia presented at the Nursing and Midwifery Conference 2017 at Kingston Hospital to over 200 nurses and midwives.
Many congratulations to filmmaker, Katie Smith & all those involved with ‘Run Run as Fast as You Can’ for WINNING Best Drama at the Los Angeles Film Awards at the BAFTA & Academy Award accredited festival, the L.A. Shorts International Film Festival !
The film is dedicated to Margot and the relevance becomes clear as the story unfolds (I am sworn to secrecy !) and unfortunately, the film cannot be shared until the awards ‘season’ is over. The more credit and recognition the film receives, the greater the awareness of the need for more bone marrow donors.
And thank you Katie !
This is a hugely popular ‘Fly Navy’ airshow which showcases the Royal Navy’s Fleet Air Arm, its current and future capabilities and historic accomplishments, including hours of amazing flying displays and spectacular role demonstrations.
It also features an enormous array of ground attractions, from engineering fairs to the latest defence technology exhibitions, Service displays, trade stalls and arena displays.
For the thrill seekers, there are simulators, fairground rides and helicopter pleasure flights to enjoy, making this a regular ‘family day out’ calendar fixture for 40,000 visitors each year.
We met many people, including existing or previous blood donors who weren’t aware of the need for bone marrow, a lady who had a bone marrow transplant three years ago, people from the police & the military, nurses, girl guides and basically the full spectrum of people and families.
Thank you to Christine Clancey and in particular Commander Henry Mereweather for the idea and for making us so welcome.
This campaign initially launched in June 2016 and was extremely effective, beating predicted monthly targets each month and reaching the annual target after only 6 months.
We are delighted that the Golden Ticket campaign has recently been re-instigated again in early 2018.
Golden Tickets are emailed, printed and posted directly to existing blood donors from the target ethnic groups in demand, 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 blood donation session.
In late April 2017 we set off for our second attempt at The Celtic Challenge, the World’s Longest true rowing race where teams race from Arklow in County Wicklow, Ireland to Aberystwyth on the Welsh coast, a distance of about 90 nautical miles.
Our initial attempt at entering the race a year earlier was cancelled, owing to bad weather.
Celtic and Pembrokeshire longboats take part in the race (and occasionally other similar boats also join in) – each boat is about 24 feet (8m) long and has 4 fixed seats and one cox.
Each team doing the Celtic Challenge consists of 12 people who take it in turns to row, spending the time in between on a support boat. An inflatable rib is generally used to transfer people between the support boat and the rowing boat. How often teams swap rowers and how people are utilised is all part of the tactics of the race.
The race is an extreme test of endurance and generally takes between 15 and 24 hours, depending on the weather. The race usually starts in the afternoon with all teams rowing throughout the night and sometimes arriving in Aberystwyth very early in the morning !
In the event, for various good safety reasons, we had to retire our boat at 5am having rowed more than two thirds of the way across the Irish Sea, 16 hours after the start. We had been making excellent progress until that time and were one of the lead boats.
Of the 13 boats that started the Celtic Challenge, only 4 rowed past the finish line. I confess that I personally found it quite helpful to hear Melvin, an eleven-time veteran of the Celtic Challenge declare: “this was the roughest of them all”.
Special thanks again to our skipper, Martin Beaumont and to the entire team for sticking with it. There are rumblings about repeating The Celtic Challenge in 2019 ! For read more about Team Margot Rowers at the Celtic Challenge 2017, click here.
This video is by Neil Griffiths, one of the Team Margot Rowers who has a blood cancer story of his own – to read more, click here. Neil raised over £8,000 for DKMS UK (we may need to rename the President’s Cup in his honour) – enjoy !
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 died on 7 November 2014. 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 “Live Your Life Day”, a day when company employees could take the day off to celebrate life with their families or in support of a charity.
Ever since, Live Your Life Day has been held in support of Team Margot Foundation and increasingly the day is becoming marked by other companies in the hospitality sector. Last year, Franca’s birthday fell over a weekend.
As part of the ‘LiveYourLife17’ activities that took place at the end of July, many pubs took part in promoting a photo competition, with an exciting prize, sponsored by Beds and Bars: an all inclusive trip to Amsterdam or Barcelona for the best photo shared with us over the weekend.
All entrants to the competition received an email explaining how they might also save a life, by joining the bone marrow register.
One of many hugely positive knock on effects following the fantastic support we receive from Beds and Bars and their St Christophers Inns chain of hostels, has been the link up with Europe’s Famous Hostels.
Europe’s Famous Hostels (EFH) is an association of individually owned, independent hostels. EFH only accept the best hostels in Europe. The association was founded in 1995 when it was made up of just 5 members. As of 2016 they have grown to include 50 Hostels, both in Europe and beyond.
Europe’s Famous Hostels’ purpose is to provide a recognisable stamp of quality in the Hostelling business. The EFH name comes as a guarantee that their customers will have a great stay at the best value; choosing a Europe’s Famous Hostel is choosing quality and great customer service.
Thank you Murray (MD at Beds and Bars) and also to Rui & Raquel at Europe’s Famous Hostels and of course all their members, who give us an awareness platform via posters, postcards and wristbands in all their member sites, which are seen by many thousands of travellers every day who are encouraged to: ‘Register, wear & share’ Team Margot wristbands.
If you live outside the UK, please check to see if you’re able to register as a potential stem cell donor in your home country – click here to find out more.
Yet more support from the hospitality sector: Richard Pryor, Mark Sexton & Sam Phillips finally trudged through the doors of Bella Italia Oxford on a November Saturday afternoon after just over 50 hours non-stop walking from central London. That’s more than 127 miles (or roughly ¼ million steps). Two days and two nights on the go, with no sleep, all in support of Team Margot.
The trio received incredible support from their company, Casual Dining Group and received fantastic sponsorship from friends, family, and work colleagues, to the extent that they managed to raise over £10,000 for Team Margot Foundation, a sum that was then matched by their company.
Well done again gentlemen on completing a gruelling challenge and on behalf of all at Team Margot, thank you again for raising and to everyone who donated such a fantastic amount of money, especially to Steve Richards for your ongoing support.
An appeal to British Sri Lankans
I received a phone call in August 2017 from a concerned father, who’s son was being treated for his blood cancer at Great Ormond Street Hospital & who now needs a bone marrow transplant, in order to stand the best chance of beating his leukaemia. The phone call came out of the blue and it brought back to me the dreadful feeling of anguish and also the despair that consumed our family when Margot was in desperate need of a bone marrow donor.
Suneth’s son, Kenu (11) was diagnosed with AML (Acute Myeloid Leukaemia) in 2014 and had been in remission for two years. However, he relapsed during the summer. And unusually, this time it’s the ALL (Acute Lymphoblastic Leukaemia) clone which is present, making Kenu’s an extremely rare case.
Margot’s heritage was rather mixed, which meant that it wasn’t possible for us to target specific communities with our public appeal, however Kenu’s genealogy is Sri Lankan – so on that basis, working with DKMS, we sought to reach out and connect with the c.200,000 British Sri Lankan’s that could potentially make a life saving difference via a series of donor registration events in temples and community venues.
Suneth contacted me again in early January to let us know that Kenu was now back home following his bone marrow transplant, acknowledging that it’s still early days and there’s a long way to recovery, but the family is happy, considering the alternative.
Thank you in particular to Ranjan for all that you did & for going the extra mile. Repeatedly.
‘Light The Way’ – Behind the Scenes Documentary – released to mark the Team Margot Stem Cell and Bone Marrow Registration Day on 7 October
Margot was diagnosed with blood cancer on 7 October 2013 and we mark this date each year as the Team Margot Stem Cell and Bone Marrow Registration Day. Essentially, we seek to encourage people to sign up as potential stem cell and bone marrow donors, not just in the UK but also internationally too.
Music has the ability to engage and motivate large numbers of people, so in 2016, working with students & tutors at Elstree University Technical College (EUTC) we released a song and music video, called ‘Light the Way‘, which was written and performed by the students, inspired by Margot.
This year by way of follow up, EUTC decided to produce a short ‘behind the scenes’ documentary for ‘Light the Way’ which showcases their work under the guidance of the masterful, Tegan Adams and we are delighted to share this with you.
By summer 2014, Margot had already been declared “conventionally incurable”, so the palliative care team from Great Ormond Street Hospital were in regular contact with us, providing advice and guidance, helping us to manage Margot’s pain with prescription medication and to keep her comfortable and clinically well with regular blood and platelet transfusions.
The whole situation was so surreal and none of us could still quite believe what was happening.
We had just celebrated Margot’s second birthday on 13 August; a wonderful day and because of the careful pain management, Margot had some very good moments, when it was incredulous to think that she might be so unwell.
And then, completely unannounced, Vicki came out with something totally unexpected, she raised the question of donating Margot’s organs.
It was a very difficult conversation to have, under the circumstances and because our emotions were running high. In a sense, it’s not dissimilar to the situation many families find themselves in when their loved ones are in intensive care or have very recently died and they are asked to make a decision about organ donation.
Nevertheless, Vicki and I had the conversation & explored the options and we are now better prepared and in a better place for having done so, and that’s the important bit (to read more about our experience, click here).
Something I wasn’t aware of until recently is that organ donation is only possible under very specific circumstances: The donor needs to be in hospital, in intensive care, intubated and on a ventilator.
I understand that the reason for this is that the transplant teams need to plan the logistics of what organs are to go where – and this process takes a few hours.
Consequently, family members are called into this environment, at a critical time. And it’s in such circumstances that the topic of organ donation arises.
Hence the importance of talking to your family and loved ones. Of course, it’s far better to have the conversation about organ donation on an even pulse, when fit & well and with the luxury of time to consider the issues at hand, clearly express wishes and decisions and ideally act upon them.
Unfortunately, many don’t ever do this and instead their families have to contend with making a decision shortly before or after the loss of a loved one.
Team Margot Foundation welcomes the Government consultation on an organ donation opt-out system for England, which was launched in December 2017 and closes on 6 March 2018. 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 & efficiency of any 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.
The consultation can be found here – whatever your views, please click this link to take part before 6 March: https://engage.dh.gov.uk/organdonation
Don’t delay !
In September, I posted a blog: Don’t forget those who are mixed race, like you.
In particular, I wanted to make the following points: ‘mixed race’ are the fastest growing ethnic minority group (as defined according to the National Statistics classification) and – with all mixed categories counted as one sole group – are predicted to be the largest minority group by 2020 (above British Indian).
According to the 2011 census, Mixed-race people are the third-largest ethnic group in the UK, numbering 1.25 million, however research conducted by the BBC, suggests that the mixed race population could be twice the official estimate figure – up to 2 million or more, making it larger than the British black population.
Arguably, the actual number is an order of magnitude greater, because the mixed race population probably also includes you.
So what ?
Because of Margot’s experience, our family knows first hand the complexities that arise from being mixed race, when it comes to donation. And this is something that we are keen to address.
For example, Team Margot are proud members of the National BAME Transplant Alliance (NBTA), which is ‘The coordinating voice for Black, Asian and Minority Ethnic transplant donation’.
Given the absence of ‘mixed race’ from the above, it was agreed at a
recent NBTA meeting that the acronym ‘BAME’ (Black, Asian and Minority Ethnic) should be altered to hereafter be referred to as ‘Black, Asian, Mixed Race & Minority Ethnic’.
The same point was made and accepted in Westminster earlier this month, given that Eleanor Smith MP is leading a review for the Shadow Health Secretary on improving the numbers of BAME individuals registered as blood, stem cell and organ donors.
Blood Donor Recognition Event – January 2018
I have been giving talks at NHS Blood and Transplant Donor Recognition Events for the last three years to recognise and thank all those people who donate blood and this was the largest event I have been invited to speak at yet.
I feel very privileged to be involved with these special awards to people who have given 100 red cell or 250 platelet donations.
Only 4% of the UK population gives blood & only 2% of all blood donors get to 100+ red cell donations – so the room was filled with remarkable people !
I regard these talks as opportunities to try and at least go some way towards expressing my gratitude, and my wife Vicki’s gratitude & thanks to all the wonderful people who stepped up and provided for us, when we were in our time of need.
And I’m sure that I also speak on behalf of all our family and loved ones and I suspect for all the patients out there who receive blood, and their families too – because, of course, the patient and the patient’s family don’t ever get to meet their benevolent & selfless blood & platelet donors.
So these talks are as close as we’re going to get to saying ‘thank you’.
And because the blood donors don’t get to meet the patients to whom they donate blood, I hope they might find something in Margot’s story that helps them relate to some of the desperate circumstances and situations that people find themselves in, when they need blood.
I found that meeting some of the donors & having the chance to chat to them a really uplifting experience.
Robert (pictured left & calls himself Bob) started to give blood in 1970 when his then girlfriend at the time (and now wife) Beverley went to give blood. “She simply said ‘I’m going to give blood. You come as well.’ So I did.”
Remarkably, Bob admits that he can’t stand needles and still is uptight & nervous until after the needle is inserted.”
But that hasn’t stopped him: “When your partner does it, it becomes a bit competitive, a bit of a game” says Bob, whose wife was recognised for her 100th donation a couple of years ago.
Michael (right) first gave blood in 1971 after his wife, Hazel had a c-section and needed a blood donation.
Jill Sandison (pictured with me above) is a red cell donor, who saw donation as a rite of passage; “My father took me with him to his donations from when I was 8 years old. To me, being grown up meant being able to donate blood.”
Jill, on a couple of occasions over the years, has been turned away and hasn’t been able to donate blood because she was anaemic at the time. “I think they still registered it as a donation, even though I was turned away, so I won’t be happy until I’ve completed my 102nd or 103rd donations!”
Finding the ‘perfect match’
In early January, we thin sliced this excellent documentary by journalism student, Stephanie Gabbatt on our social media platforms, to make it more easy to watch and share, however for anyone who wishes to see the documentary in full, please see below.
The documentary features interviews with patient, Venessa, stem cell donors Ed and Joseph as well as Beverley De Gale, co-founder of The ACLT (African Caribbean Leukaemia Trust), Henny Braund, CEO of Anthony Nolan and Margot’s father, Yaser Martini from Team Margot.
Thank you very much again Stephanie for helping to shed light on the issues involved – and congratulations on achieving a 1st class honours !
FINANCIAL DONATIONS, FUNDRAISING AND USE OF FUNDS
As at 29 January 2018, the total fundraising and cash donations received during the last 12 months amounted to £96,317.75, which is very similar to last year’s total (£99,640.06), albeit the emphasis has shifted (see below). This outcome is all the more incredible given that the charity doesn’t actively fundraise or publicly seek financial donations.
Nevertheless, the trustees recognise that many people want to donate money and/or fundraise in support of the charity work, 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.
To all our wonderful donors and fundraisers, THANK YOU so much again for your fabulous support.
Team Margot Foundation has two bank accounts at Charities Aid Foundation Bank (CAF Bank):
a fundraising account – this account received £43,915 (down from £71,033.44 last year) during the course of this year from generous donations and fundraising activity by the general public. Notably, this includes funds raised by Casual Dining Group and Team Margot Rowers. All this money will be granted to families caring for child cancer patients (see below).
The 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, to the extent that it is possible.
GRANT GIVING BY TEAM MARGOT FOUNDATION
Over the last three years, Team Margot Foundation has made a total of 119 grants: to UCL & Great Ormond Street Hospital’s Childrens Charity to further leukaemia research, to a local charity, Momentum for psychological services for patient families & also to Shooting Stars Chase, the hospice where Margot’s body rested, prior to her funeral.
However the vast majority of all these grants made by Team Margot Foundation have been ‘one-off’ £1,000 grants to families caring for child cancer patients.
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 highlighted 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.
These £1,000 grants are for patient families to use in any way they wish. Within the hospitals and the teams work with, they have come to be regarded as ’emergency funds’, because following completion of the verification process and the receipt of bank details, the funds are granted and typically arrive within 24 hours.
Initially, these families mainly stemmed from the haematology wards at Great Ormond Street Hospital and via Momentum, based at what was Margot’s local hospital in Kingston, however during the course of the last year, the network of hospitals expanded to include Birmingham, Bristol and Manchester Children’s hospitals as well.
Consequently, during the last 12 months, all 78 grants went directly to families caring for child cancer patients – a huge increase on the 35 such grants that were made the year prior.
Inevitably, this expansion and the success of these emergency grants tested the limits of our cash resources and as a result, the trustees notified our contacts in all the hospitals that the grants
programme had closed for the year on 13 September 2017.
In anticipation of further donations, the trustees met in January 2018 to review how best to proceed, deciding to allocate any remaining cash in the fundraising account to the hospitals where there is an existing system and process.
These grant allocations will be made in due course on a pro rata basis, based upon the number of grants made during the 2017 calendar year.
Thereafter, the grants programme will once again close and the trustees will conduct an annual review every January, to assess the ability of the charity to make additional grants.
The grants made by Team Margot Foundation are only possible because of you and your efforts & generosity. On behalf of everyone involved at Team Margot and in particular the grant recipients, thank you.
In August, we discovered the story of a donor called Tom, who signed up as a potential bone marrow donor because of Margot…
On average, there’s someone like Tom every week, who registered because of Margot or because of the efforts of Team Margot and who then goes on to donate peripheral blood stem cells or bone marrow.
These donations give hope and a second chance at life to patients, for whom there are no other options.
We love hearing these donor stories, however the vast majority of the donations are anonymous, so we always love to herald the few where the donors are willing to share their experiences.
On behalf of all the patients & their families & loved ones, THANK YOU and not just to Tom, Sam and Tessa but to EVERYONE who has joined the stem cell register & who supports Team Margot !
Statistically, we are told by DKMS UK that there will be more than 500 people, over 10 years, who will now receive a potentially life saving bone marrow transplant, thanks to the work of Team Margot, which is amazing.
Other Team Margot stem cell & bone marrow donor stories – click below to read more:
For whatever reason, I have found this years review the hardest to write and again, have avoided trying to name all our fantastic volunteers and supporters because it’s simply not possible to do justice to the many wonderful people, companies, schools and communities who continue to support Team Margot.
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 again, a brief but special mention to those who make one-off or regular financial contributions to Team Margot Foundation.
Thank you also to our partners, NHS Blood and Transplant and also the Welsh Bone Marrow Donor Registry, Anthony 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.
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 awesome 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 continued love, support and compassion and also our boys, Oscar (10) & Rufus (9) for their understanding; being in our situation is challenging and it impacts each of us in different ways. And of course, Digby (2) and our newest family member, Humphrey (3 months old at the time of writing) for the joy they bring to all our family; Margot would have loved her little brothers.
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