Hayley Carter Smith

Over coffee one surprisingly sunny January morning, Yaser was updating me on all the developments at the Team Margot Foundation. As you’ll know, there’s always rather a lot going on, and I get the impression that sitting down for half an hour for a coffee and a chat isn’t typically in Yaser’s repertoire.

We got around to discussing the foundation’s primary mission – that everyone should join the stem cell register, but particularly those from a BAME or mixed heritage background, as these groups are seriously underrepresented. Of the already shockingly-low 2% of the population who has joined a UK stem cell register, just 3% of that number are from a BAME or mixed heritage background, making it statistically very difficult, if not impossible, for some to find a bone marrow match when they most need it.

Yaser was telling me about his and Vicki’s rather exotic backgrounds – Thai, Syrian, New Zealander, Irish – and making me rather envious. As a pale, occasionally ruddy-looking, thorough-bred English girl, the only way I felt I could fully join in with the conversation was to live vicariously through my husband, who is half-Japanese, half-English.

We have both joined the DKMS register, but I glibly quipped that the register doesn’t need more people like me – solidly British, in fact, pretty solidly Mancunian. Yaser made a bet with me that if I were to do an ancestry test, I might be surprised – we’re all individuals and it’s taken us thousands of generations to get to the person we are today. I had been toying with doing one of these tests for a while and so gamely agreed.

The test kit was ordered and a week later I found myself valiantly spitting into a test tube (it takes quite a lot of effort to reach the required amount…) and I returned the pack for sampling right away. The results do take a little while to come back to you but, depending on the company you use, the sample has a long way to travel. It was about six weeks in total until the results came back, which is rather a long time when you’re eagerly awaiting something. I talked at length about it with my family, which brought up stories of Irish, Welsh and Scottish family members, but that was about as far-reaching as we seemed to go.

One afternoon, I received an email saying that my results were in. I opened the email with anticipation, and the webpage seemed to take an age to load. There it was – 79% British/Irish, not at all a surprise, but then the biggest shock – 10% Franco-Germanic! Which, in the grand scheme of DNA, and for someone whose family is not at all exotic, is not insignificant. What’s more, this relative, likely a great-great grandparent, was only born between 1780 and 1830, so we’re talking fairly recent history, too.

Hayley with Yaser, Margot’s father

The remaining 10% is a little more difficult to pinpoint… a little Scandinavian (which explains my love of ABBA) and Eastern European but, sadly, yet tantalisingly, the rest was ‘unknown’.

It was a pleasant shock and surprise to find out that I am more mixed than I thought – granted, 20% isn’t much, but it just goes to show that we will all be more mixed than we might think!

Yaser was right; we are all individual, just like our parents, our grandparents and our great-grandparents before us, who have all contributed to make us who we are. Even if you’ve always lived in the same street, in the same town, who’s to know what your genes might reveal?

I’m now even more determined to get “just one more” signed up to the stem cell register – the more of us that are on there, with all our mixed heritages, the more chance we have of being the perfect match for someone when they need it most.

Dear Team Margot Supporter

Five years ago today, my daughter 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 the anonymous bone marrow donor for his gift of hope and the extra time we enjoyed with Margot.

The Team Margot Celtic Challenge crew at the airport, on our way to Arklow, Ireland for the start of The Celtic Challenge 2017

We usually mark this time by reviewing the charity’s activities for the previous year, however today we are instead looking to the 12 months ahead, which will be dominated by… rowing !

THE CELTIC CHALLENGE 2019

Team Margot has twice entered a mixed rowing team into the Celtic Challenge, a 95 mile rowing race across the Irish Sea. Our first attempt was thwarted when the race was cancelled because of stormy weather, however we made the most of all the training by winning the time trials around Aberystwyth harbour !

In 2017 we were one of 14 boats that started the race, only to be forced to retire two thirds of the way across, along with 9 others. So, this year 12 of us are again heading out to the race starting point in Arklow, Ireland over the May Bank Holiday weekend, with a view to completing some unfinished business – third time lucky ! 🤞

Martin Beaumont

Our skipper and team motivator throughout has been Martin Beaumont, who initially telephoned me, right out of the blue, in January 2014, when we were in the midst of Margot’s appeal. Martin is a father to two boys, who are a similar age to our two eldest and he’d heard about Margot’s appeal from other parents at our children’s school.

He empathised with our situation and as is his way, quickly came to the point: “Tell me how I can help”. It was immediately clear to me that Martin was a “doer” and I think it’s safe to say that I’d never met anyone quite like him before.

I explained that what we really needed was more potential bone marrow donors, which required getting people to join a register; the process is actually very simple, however in order to stand a chance of being helpful to our daughter, I explained that we really needed this to happen on a large-scale.

And quickly.

We soon met and thereafter, we literally had three more brief telephone conversations before a national print and online media advertising campaign launched, with full page, half & quarter page adverts in every national newspaper and with appearances across all digital channels. I later learned that Martin had formed a small team of school parents, including a creative director James Howard-Vyse and advertising executive Caroline Foster Kenny to activate this initiative, something that might have otherwise cost around £250,000.

This media campaign was precisely what we needed at the time and the impact that it had was a hugely positive boost, helping to sustain the momentum that had already been created and sparking other opportunities within the national TV, radio and online media to spread the message further afield. In the event, Margot’s appeal saw over 50,000 people request swab kits online in the UK alone and her appeal appeared in the media of more than a dozen countries around the world, during that six week period.

Martin and his family became our good friends and after Margot’s death, we continued to campaign, as Team Margot, for more people to join the stem cell and bone marrow registers.

More recently, Martin came up with another idea to not only support Team Margot, but also to address a long-held personal ambition; this time the idea was to enter a team to row across the Atlantic Ocean.

TALISKER WHISKEY ATLANTIC CHALLENGE 2019

Team Margot Atlantic Rowers (L to R): Hamish Miller, Dr Tom Konig, Guy Dresser, Martin Beaumont

In December 2019 the Team Margot Atlantic Rowers will be competing in the Talisker Whisky Atlantic Challenge, rowing 3,000 miles across the Atlantic Ocean.

Perhaps unusually for a charity, we aren’t asking people to donate money, but instead we are asking everyone who is eligible, in particular those of mixed heritage, to go on standby to save a life by joining us on the blood stem cell register. Sadly the register of stem cell donors isn’t large enough, nor is it sufficiently diverse to meet the patient need. If you’re between 17-55 years of age and in general good health you could save someone’s life.‍

Each time the team row a stroke, we want someone to register as a stem cell donor. It takes about 1.5 million oar strokes to row across the Atlantic, and we want 1.5 million people to register as stem cell donors. If we were to achieve this goal of doubling the size of the combined UK stem cell registers, then statistically there would be over 15,000 patients who would get a potentially life saving stem cell transplant.

It’s an outlandish target and to succeed, this needs to become a major national outreach campaign. I believe there is an opportunity to unite the country around stem cell donation; whilst our differences matter, our common humanity matters more !

We intend to take you along this journey with us and this video is an initial glimpse of what we are up to…

Please help support by following, sharing and encouraging people to join the stem cell register. And if you have ideas, contacts and influence that might help spread the message far and wide, I’d love to hear from you.

Thank you.

Yaser, Margot’s father & Team Manager

Team Margot Atlantic Rowers
Pulling Together Saving Lives

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.

That’s why, in partnership with NHS Blood and Transplant, we created a tailored education programme for primary schools called ‘Giving to help others’, which starts with an assembly presentation.

We believe that tailored education and awareness for children of primary school ages (5-11) will ultimately result in two key outcomes:

1. that the children will themselves grow up accepting donation as the norm, not the exception, such that a greater proportion of them will become registered adult donors and
2. children will feel sufficiently empowered to influence their families and loved ones at home and elsewhere

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.

Team Margot
Together, saving lives

The Giving To Help Others assembly presentation is available to download for free via: givingtohelpothers.org