February 21, 2020

The future of Team Margot Foundation is about education

By
Margot, July 2014

Margot, July 2014

Dear Team Margot Supporter

Our family set up Team Margot Foundation three months after Margot died and last month marked five years as a Charitable Incorporated Organisation and over six years since we launched Margot’s appeal for her matching stem cell donor. 

It’s a time of reflection and we have tended to use today, the anniversary of Margot’s bone marrow transplant in 2014, as a time to publish information about the work of the Charity.

By all accounts, Margot’s appeal was remarkable. At the time, it was credited as having been the most high profile global donor appeal anywhere in the world, embracing national and international TV, radio, print, online, outdoor media and Virgin America flights; Margot’s appeal was covered by the media in more than a dozen countries. During the first 6 weeks of Margot’s appeal, DKMS UK (previously named Delete Blood Cancer UK) received over 50,000 requests for swab kits in the UK alone, resulting in tens of thousands of people registering as stem cell donors. 

As a direct result, every week since, on average one blood cancer patient has had the chance of a potentially life-saving bone marrow / stem cell transplant.

The Orgamites have a starring role in our "All About Organs" module

The Orgamites have a starring role in our “All About Organs” module

What’s also remarkable is that Team Margot is still campaigning for everyone who is eligible, particularly those of mixed heritage, to register as stem cell and bone marrow donors. 

A short book by the award winning Arabella Greve, aged 15: "My message, from one teenager to another, is that we have the ability to do something amazing."

A short book by the award winning student author, Arabella Greve, aged 15: “It is my greatest wish that this book will provide inspiration to young people to sign up to the stem cell register when they become eligible on their 16th birthday. My message, from one teenager to another, is that we have the ability to do something amazing. Our cells are young and healthy, and at no cost to ourselves, we could save someone’s life – what greater gift as a human being is there?”

And because Margot needed many blood and platelet transfusions to keep her well during treatment and following the tough discussion my wife and I had about donating Margot’s organs, the Charity also promotes the need for more blood donors and organ donors too.

The Charity has primarily sought to encourage more stem cell registrations and the modus operandi has been to try and do less of the ‘on the ground’ registration events (although there were some 60 donor registration events held in the 12 months after Margot died, with many others since) and instead, more of the activity that might drive people online to register in large numbers. 

Screenshot 2020-02-20 at 23.13.23This has included a diverse array of activities, amongst other things: publishing a song and music video with students from Elstree UTC & the Royal Philharmonic Concert Orchestra called “Light The Way” (“an anthem for people with blood cancer“), a national campaign that included media appearances on TV & radio, a national billboard campaign, numerous adverts & media appearances such as appearing on the London Underground and UK railway network and an appearance on London’s world famous Piccadilly Lights. Other events have included a Parliamentary Reception at The House of Commons, a photographic Exhibition at City Hall in London, an expedition across Greenland, Mayors Question Time, three attempts at rowing across the Irish Sea (we made it third time lucky!), a documentary “Finding the Perfect Match” by Stephanie Gabbatt, several appearances at the Great River Race, a ‘Team Margot Ten Miler’ and most recently, the epic Atlantic Row and #WeRowYouRegister campaign.

Such reflection naturally leads on to more practical, current considerations and the trustees have been giving a lot of thought to the relevance of the Charity today and how it might continue to make a meaningful difference into the future. 

Accordingly, going forward, the focus of the Charity will be on education, primarily via the ‘Giving to help others’ platform. This education programme, which has been conceived and developed in partnership with NHS Blood and Transplant, is aimed at children of primary school ages and raises awareness of & encourages stem cell donation alongside other forms of donation, such as blood and organs. The Charity seeks to encourage schools, parents and guardians to download the free, teacher approved materials to begin the conversation and learn the facts about donation together with their pupils and children. The aim is to bring about long term culture change, particularly in the communities where the need is greatest, so that increasingly people register and are donors & ultimately for donation to become regarded as the norm, rather than being the exception.

Team Margot Foundation is first and foremost a campaigning charity, however it also has a grant giving function. The trustees are immensely grateful to the many people, schools & organisations for their generous donations and inspirational fundraising that has enabled the Charity to make 186 ‘one-off’ £1,000 grants towards families caring for child cancer patients. These grants are for the recipient families to use in any way they wish & they have come to be regarded as ‘emergency funds’ because the funds are approved and typically arrive within 24 hours, following receipt of the patient’s bank details. 

On behalf of the recipient families, the various hospital networks & social workers who make the approval process so straightforward: thank you.

And as ever, thank YOU for your ongoing support.

Team Margot
Together, saving lives

Screenshot 2020-02-20 at 23.04.17

Posted in: Journal
January 23, 2020

CONGRATULATIONS 🥳 Team Margot Atlantic Rowers

4E4B8B65-EBE1-44E8-A949-B78B4BE8A0A0
By
Posted in: Journal
October 7, 2019

You don’t have to do anything extreme… we just want you to register

By
3

Margot’s brothers, Oscar & Rufus, visit her at the Paediatric Intensive Care Unit at Great Ormond Street Hospital (GOSH)

Swabbing by boat

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.map-of-twac

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. 

Margot needed blood

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. 

Screenshot 2019-10-06 at 22.24.58The 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 a starring role in our "All About Organs" module

The Orgamites have the starring roles in our “All About Organs” module

WRYRCentral 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. 

Screenshot 2019-10-06 at 22.03.47Screenshot 2019-10-06 at 22.07.56Team 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

HOW TO REGISTER AS A
STEM CELL OR BONE MARROW DONOR

BECOME A BLOOD DONOR 

Screenshot 2019-10-06 at 22.08.21Screenshot 2019-10-06 at 22.40.18REGISTER AS AN ORGAN DONOR

Posted in: Journal
September 9, 2019

Why your mixed heritage could be vital

By

Margot’s mixed heritage was the reason why it wasn’t possible to find her perfect matching donorWhat’s your heritage ?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

https://www.itv.com/news/granada/2019-09-02/cheshire-father-rallies-around-for-more-stem-cell-donors/

 

Posted in: Journal
April 28, 2019

What’s it like to actually donate ?

By

Donors talk about their stem cell & bone marrow donation experiences

Tom

Tom

Sam Bell

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

Tessa Roberts

donors

(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, donating her peripheral blood stem cells

Rajbinder Kullar

Screen Shot 2017-02-19 at 23.25.09

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

Alexandra Caseley

 

Ros Maafi

Ros Mafi

T H A N K   Y O U  

 

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

Posted in: Journal
August 11, 2018

The Culture and Philosophy of ‘Giving to help others’

By

IMG_3885We 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.

Screen Shot 2018-02-25 at 23.20.20It 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

 

Posted in: Journal