In 2013, 14-month-old Margot Martini was diagnosed with blood cancer and required a bone marrow transplant (also known as a stem cell transplant) to stand the best chance of survival.
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.
Video blogs on the bone marrow donor’s journey, Margot’s transplant video, Team Margot donor registration events, our original appeal video for Margot & much more !
Thank you for all your support and for helping to create such a buzz in the days, weeks & months leading up to today and many congratulations on what has already been achieved – together, we have sparked a new movement and it’s really quite remarkable. Your participation has been wonderfully varied and it’s all hugely welcome. Tens of thousands of you have registered as potential stem cell donors, not just in the UK but also abroad. Others have simply helped where they can by chatting about Margot and spreading the word, encouraging others to think about the vital need that exists and the over-arching theme of ‘giving to help others': giving blood, stem cells / bone marrow and organs.
Regrettably, I was too busy in my previous life to consider much of this in any meaningful way. And then, suddenly, everything changed when Margot was diagnosed with blood cancer two years ago.
When I realised that people had donated blood anonymously (not to mention registered as potential stem cell and bone marrow donors), to help others like my daughter in perilous condition, I felt huge relief and enormous gratitude. And for a moment, I was overcome with a sense of wonderment, which quickly turned to acute shame and embarrassment, because I myself was neither a blood donor, nor was I on the stem cell register.
At the time, I knew little or nothing about leukaemia and wasn’t even aware of what a bone marrow or stem cell transplant was.
It turns out that I wasn’t alone.
That’s why, on behalf of everyone at Team Margot, I’m delighted to officially launch this international day which is designed to promote awareness of the need for more potential stem cell and bone marrow donors to join not only the UK register but also stem cell and bone marrow registers in other countries around the world too.
No such awareness day previously existed, so we decided to create one.
Essentially, we need larger and more potent registers around the world. Margot was mixed race and importantly, this was the reason why we were unable to find her a donor with a “perfect” tissue type match. Unfortunately, the same issue exists for anyone from a Black, Asian or Minority Ethnic community (BAME) – for whom the chances of finding a perfect match is only 21%. This is because where bone marrow and stem cell transplants are concerned, race and ethnicity matters.
That’s why we campaign for more people to join the stem cell registers, especially people from ethnic communities and those with a mixed heritage.
I’m writing this on 6 October but can already declare our awareness day a triumph ! – so much has been happening & so many stars are aligning – but the day has yet to run it’s course, so please: download, print & display this poster in your workplaces and local communities, take pictures of our digital posters on the London underground and then post them and other snaps relevant to you on social media using the hashtag #Register4Margot
But most of all, please join the stem cell register and then encourage Just One More to do the same. Today is about telling someone about the urgent need for more potential stem cell & bone marrow donors, talking to them about Margot & so many others like her and explaining just how easy it is to join a register and potentially save a life.
We want people to care enough to pause for a moment, understand what they can do to help and then take positive action – register and share with others – if you like, please: Register, Care & Share !
Margot was 2 years and 2 months old when she passed away on 27 October last year and our initial goal is to double the number of potential stem cell and bone marrow donors on the UK register to 2.2 million. And because a matching donor could come from literally anywhere in the world (Margot eventually found a “suitable match” in Germany), we also wish to see the worldwide registers grow in size and potency too.
Please do what you can to help make this a reality. In your own time and in your own way.
Thank you all again, it’s really wonderful to have your support.
And thank you Margot for being our inspiration.
Together, saving lives
“As co-founders of the ACLT and parents of former leukaemia patient, Daniel De-Gale. We would like to congratulate Yaser, Nadia and the team at Team Margot Foundation on the launch of its inaugural International Stem Cell and Bone Marrow Awareness day. The ACLT fully supports this lifesaving worldwide initiative where someone is able to simply register in order to be tested and on standby in the hope that one of us is able to be chosen as a “special one” to help someone in urgent need of the gift of life.”
Beverley De-Gale, OBE & Orin Lewis OBE, Founders of ACLT (African Caribbean Leukaemia Trust)
Ann O’Leary, Head of Register Development at the blood cancer charity Anthony Nolan, said: “Saving the lives of people with blood cancer is a truly global effort, as countries all over the world work together to find stem cell matches for people in need of a transplant.
“That’s why we’re so delighted that Team Margot are about to launch their first International Stem Cell and Bone Marrow Awareness Day. Margot’s legacy inspired an incredible number of people to become lifesaving stem cell donors all over the world, and we are looking forward to recruiting the next generation of lifesavers on 7th October at donor recruitment events in Margot’s name.
“Team Margot’s International Stem Cell and Bone Marrow Awareness Day will bust myths, raise awareness and bring hope to those desperately waiting to find a donor.”
Seun Adebiyi, Project Manager, Global Partnerships and Planning, American Cancer Society said: “When I was diagnosed with leukemia and lymphoma at the age of 26, I was shocked to learn that my African ancestry meant that I had less than a 17% chance of finding a compatible bone marrow donor. Thousands of patients with minority or mixed heritage search every day for a life saving donor. I was one of the lucky few who found a match, but many do not. Patients who can’t find donors are just as deserving of life as anyone else. We desperately need more donors of minority and mixed ancestry to overcome this inequity and to give patients like Margot a second chance at life.”
Theo Clarke, Lead Donor Relations Manager at NHS Blood and Transplant, said: “We really need young blood donors to sign up to the British Bone Marrow Registry (BBMR) and potentially become that one in a million match for someone in desperate need of a transplant. Joining the registry is really easy, all you have to do is tell a member of staff at the start of your next blood donation session that you want to join the registry and an extra sample of blood will be taken during your donation.
“Currently the chances of Black, Asian and Minority Ethnic (BAME) and Mixed Race patients in the UK finding a matching donor can be as low as 40%, whereas Caucasian patients have around a 90% chance of finding a donor. So NHS Blood and Transplant is looking to recruit young BAME and Mixed Race blood donors and Caucasian male blood donors between the ages of 18 and 30 on to the BBMR . The more people we have on the register, the more of a chance we have at finding a match.”
To find out where your nearest session is and to book an appointment to give blood and join the BBMR, call 0300 123 23 23 or visit www.blood.co.uk.
A message from The Caribbean Bone Marrow Registry: “You turned your pain into a passion that became a purpose and a part of a great movement. On behalf of the team, members and affiliates of the Caribbean Bone Marrow Registry, we applaud your efforts and commitment in making a difference in the lives of those suffering from these terrible diseases. Thank You. We invite all to enroll, be a match and save a life.”
Peter Mas-Mollinedo, CEO of Delete Blood Cancer UK said: “In 2015 we have celebrated the 100th donor within Delete Blood Cancer UK. This marks a wonderful milestone in the organisation’s development. We would not have achieved so much so quickly without Margot’s appeal, so it is fitting tribute to all involved. We will continue to try and grow the registry so that everyone who needs a blood stem cell transplant will receive one. It really is very simple to register and it is such a heroic deed to become a donor, so why wouldn’t you just swab and register. Take 5 minutes of your life to help save someone’s life.”
Christa Justus from Gabrielle’s Angel Foundation for Cancer Research said: “Margot Martini’s legacy is beautifully secured through the vital work of Team Margot. Gabrielle’s Angel Foundation for Cancer Research proudly supports their efforts to help other angels like Margot live long, healthy, cancer-free lives.” gabriellesangels.org
Betina Sørensen, M.D. Senior Consultant at Aarhus University Hospital, Denmark said: “We are pleased to be working with Team Margot and fully support the Team Margot Stem Cell and Bone Marrow Awareness Day. Here in Denmark we will be marking the occasion in our blood bank by putting Team Margot stickers on soft drinks, chocolate and fruits, putting up posters on the walls, handing out Team Margot bracelets and showing the video with Margot in our waiting room.”
Matti Korhonen, Senior Medical Officer at the Finnish Stem Cell Registry said:
“The Finnish Stem Cell Registry supports the International Stem Cell and Bone Marrow Awareness Day. We hope that through this initiative many more will decide to give leukemia patients a chance for cure.”
Tarryn Corlett – Chief Executive Officer of The Sunflower Fund, South Africa said:
“It is vital that we create awareness and educate the public about Leukaemia and other life threatening blood disorders as well as the desperate need for bone marrow stem cell donors. One of the biggest challenges that we face in South Africa, is the shortage of donors from Black, Coloured and Indian ethnic backgrounds. Team Margot Stem Cell and Bone Marrow Awareness Day will assist in the endeavours to educate the public and hopefully encourage donors, from all ethnic groups, to step forward all over the world.
If you are in South Africa and would like to become a lifesaving bone marrow stem cell donor, please contact The Sunflower fund on 0800 12 10 82 or visit www.sunflowerfund.org.za”