Team Margot campaigns for every individual who is eligible, particularly those of mixed heritage, to register as a stem cell and bone marrow donor. In October 2013, 14-month-old Margot Martini was
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.
Alongside our partners at NHS Blood and Transplant we have developed an education programme for children of primary school ages, explaining how we can give to help others. This video is for children to
Margot passed away five years ago today. She died peacefully, at home surrounded by those who love her.
Thank you for all your love and support.
Vicki, Yaser, Oscar, Rufus, Digby & Humphrey.
We miss you Margot. x
____________
“LIGHT THE WAY“
A song inspired by Margot Martini
(13 August 2012 to 27 October 2014)
By Grace Hynds & Daniella Bernard
Music streaming platforms: Apple Music, Deezer, KKBox, Soundcloud, Spotify, Tidal
Margot, pre-diagnosis (June 2013)
Lyrics to “LIGHT THE WAY“
I will apologise for my tears
But that doesn’t mean I don’t hear you here
It’s been so long since I have seen your face
But I will be strong because you were brave
I know so much I didn’t before
because of you I’m living more
And with this hope I’m paving the road
So stay there to light the way
Stay there to light the way etc
You lit a candle in me and I knew I wasn’t alone
And your inspiration
Is saving lives
It’s your inspiration!!
It’s been so long since we have seen your face
But we will be strong because you were brave
We know so much we didn’t before
Because of you we’re living more
And with this hope we’re paving the road
So stay there to light the way
Stay there to light the way etc
I will run, run with you
And I will dance, dance with you
All my life
So stay there to light the way
Stay there to light the way
Keep shining on etc
I will apologise for my tears
But that doesn’t mean I don’t hear you here
Margot’s brothers, Oscar & Rufus, visit her at the Paediatric Intensive Care Unit at Great Ormond Street Hospital (GOSH)
WeRowYouRegister.org
On Monday 7 October 2013, Margot was diagnosed with blood cancer. Today is the first Monday 7 October since that day, and the fifth year we have promoted a Team Margot Stem Cell and Bone Marrow Registration Day.
Team Margot campaigns for everyone who is eligible, particularly those of mixed heritage, to register as a stem cell and bone marrow donor.
This year we are promoting this message via the Team Margot Atlantic Rowers and our #WeRowYouRegister campaign. Our three man team will embark on the 3,000 mile Talisker Whiskey Atlantic Challenge on 12 December, rowing from La Gomera in the Canaries to Antigua in the largest race yet.
The idea is that you don’t have to do anything extreme, like rowing across the Atlantic, we just want you to join the register.
On arrival at GOSH, Margot urgently needed platelets to stabilise her clotting function & also red blood cells to replace her blood, which was riddled with leukaemia
Whilst our core message hasn’t changed, along the way we have reflected upon the circumstances of Margot’s situation & her urgent need for blood and platelets 6 years ago today, as well as how Vicki and I considered donating Margot’s organs shortly before her death.
The culture and philosophy of donation is central to it all and we refer to this as ‘giving to help others’.
In partnership with NHS Blood and Transplant, we launched givingtohelpothers.org two years ago and this week we will be notifying tens of thousands of primary school teachers and PSHE coordinators directly via email, of our latest education module “All About Organs”, in advance of the new law change around organ donation in Spring next year.
The Orgamites have the starring roles in our “All About Organs” module
Central to ’Max and Kiera’s law’ is the practical involvement of family and loved ones with the decision to donate the organs of the deceased.
Please spare a moment today to talk about donation with your loved ones, so that each of you knows of the others decision.
Someday, it might help them to honour your choice at a difficult time, and help you to honour theirs.
Thank you.
Team Margot
Together, saving lives
FIND OUT HOW YOU CAN SAVE A LIFE
(click on the links below)
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
In 2013, my daughter Margot was diagnosed with blood cancer and she needed a bone marrow transplant to stand the best chance of survival.
But a transplant isn’t possible without a donor.
In the search for her donor match, we learned that Margot’s mixed heritage was the reason why it wasn’t possible to find her ‘perfect match’.
People with a mixed heritage are the most disadvantaged when it comes to seeking a donor with a matching tissue type. Similarly, those from the Black, Asian and minority ethnic communities are far less likely to find their match than a white Northern European patient, for instance.
The registers of stem cell and bone marrow donors are simply not large enough, nor are they sufficiently diverse. It is estimated that mixed race makes up only 3% of the registered bone marrow donors worldwide.
It’s complex; mixed race has no medical definition and because of varying perception’s of what ‘mixed heritage’ or ‘mixed race’ is, there is no common understanding. Moreover, how people choose to self identify and relate to this often determines whether they recognise the need to register as a stem cell and bone marrow donor.
Margot’s story underscores the importance of these issues; her heritage was a blend of Syrian, Armenian, Scottish, Thai, English and New Zealand, however none of this could be determined from simply looking at her.
The need for more donors of mixed heritage on the registers is only becoming greater and more necessary. Thankfully, the message is beginning to get out and today there are two campaigns running right now where mixed race patients are desperately seeking their perfect matching donors.
Please see Astrid & Peter’s stories below and SHARE.
Thank you.
Team Margot
Together, saving lives
Astrid has leukaemia and is desperately searching for a stem cell donor
But because of her mixed race, she faces a huge challenge
[tap to expand] https://t.co/SAo7jJEQEk pic.twitter.com/EADlX9cEqO
— BBC News (World) (@BBCWorld) September 7, 2019
Tom
Sam Bell
Tom [pictured – click here for his story] is just one of many people who signed up as a potential bone marrow donor because of Margot and went on to donate.
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.
Tessa Roberts
(L to R): Judy Leden, peripheral stem cell donor; Nadia; me; Katrina Krishnan Doyle, bone marrow donor
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.
Listen to Katrina talk about her experiences as a bone marrow donor, which is the much less likely form of donation.
On behalf of all the patients & their families & loved ones, THANK YOU and not just to Tom and all the donors listed here but also 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.
Rajbinder Kullar
James Payne
Team Margot stem cell & bone marrow donor stories – click below to read more:
Rajbinder Kullar (peripheral stem cell donor)
James Payne (peripheral stem cell donor)
Ros Mafi (peripheral stem cell donor)
Judy Leden MBE (peripheral stem cell donor)
Katrina Krishnan Doyle (bone marrow donor)
Alexandra Casley (peripheral stem cell donor)
Alexandra Caseley
Ros Mafi
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
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:
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
REGISTER AS AN ORGAN DONOR
We urgently need more people to register as potential stem cell / bone marrow donors.