Margot & Vicki during her bone marrow transplant, 21 February 2014

“Stem cell / Bone marrow transplants themselves are surprisingly unremarkable events, which belies their vital significance.

The bone marrow itself looks very much like blood and the transplant process itself is no different from the way in which blood transfusions occur… Public awareness & understanding of bone marrow transplants is poor and the procedure itself is often widely misunderstood. So, one of the key reasons for publishing this video is to help dispel some of the myths. 

Margot slept through part of her bone marrow transplant, totally unaware of what was going on. There was no anaesthetic administered and you’ll note that it’s not an “operation”.

I wrote the above in this blog post on the first anniversary of Margot’s bone marrow transplant. Ever since her transplant on 21 February 2014, the date has become a moment in time when I tend to reflect on all that has happened, and also consider what lies ahead.

And in spite of the tragic negatives, the bad and sad, so much good & positivity has happened and been spread, thanks to you.

I’m addressing this post directly at you, because, whether you realise it or not, you ARE Team Margot, by virtue of your support & the actions you have taken. Your references to Margot’s story help spread the word.

It’s amazing because, as we have seen many times, simple conversations and actions can ultimately lead to life saving outcomes. 

We set up the charity, Team Margot Foundation 3 months after Margot died, in her name and to honour her legacy.   In context, my definition of ‘legacy’ is: a gift transmitted by a predecessor and this gift is one of life. Whilst you might not be eligible to donate your stem cells, blood or organs, that you have encouraged others to do so or have joined a register (regardless of whether you have actually donated), is your legacy in itself.

So, Margot’s legacy is your legacy too. 

Late last year the charity began working with Skylark Works on Team Margot’s impact philosophy and I’m pleased to share this with you in the attached images.

Subsequently, in conjunction with Oxford University, we launched an impact study, funded by the National Lottery which is currently underway. The impact study comprises a survey, interviews and collaboration with our “stakeholders”… you.

To everyone who has / is still taking part in this piece of work, THANK YOU SO MUCH AGAIN for your time & inputs, which will help the charity understand how it’s doing by listening to the people we work with and also those whose lives we are trying to save and improve.

Team Margot
Together, saving lives

Since it’s inception, Team Margot Foundation has granted a total of £232,000, which is in addition to the £275,000+ raised & donated by Team Margot, prior to the formation of the charity.

This means that to date, Team Margot has either donated or made grants of over £500,000 to people, projects and charities close to our hearts.

Of course, the grants & donations made by Team Margot are only possible because of you and your generosity. On behalf of everyone involved at Team Margot and in particular the grant recipients, thank you.

What follows is a summary of how the grants have been made by Team Margot Foundation and how they came about.

£1,000 “Emergency 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.

Vicki and I saw this first hand during our time at Great Ormond Street Hospital with Margot. Families were struggling to make ends meet, all the while juggling commitments outside the hospital, with caring for their sick child.

You’ll note below that available funds have primarily been granted to families caring for child cancer patients. These one-off grants per family are made on a “no strings attached” basis and are for the family to use in any way they wish.

Over the last few years, these grants have come to be referred to as “Emergency Grants” by the hospitals we work with, because the application process is extremely simple and once the patient and family verification is complete & the recipient’s bank details have been received, the £1,000 grant is typically received within 24 hours.

We set out below the grant giving by Team Margot Foundation since establishing the charity in January 2015. The trustees of Team Margot Foundation are pleased to be making these one-off grants in the belief that they help in some small way. The graphs have been rebased following the trustees decision to report calendar year accounting periods, from 1 January to 31 December each year.

Initially, the charity made grants via Great Ormond Street Hospital in London only, however over the years we have expanded our network to the following 11 hospitals (helpfully, the latter 7 via the Kingston Hospital based charity, Momentum):

2015

During the charity’s first year, there was a total of £8,100 granted by Team Margot Foundation, £5,100 to Momentum, to launch their family counselling services, with the remaining £3,000 being granted to three families caring for child cancer patients.

Momentum later reported that this initial grant of £5,100 helped eight families receive psychological services. Of these families:

• two families were dealing with the sudden death of a child

• one family was dealing with bereavement following an illness

• five families had a child with very challenging health diagnosis, such as relapse of a previous condition, a very poor diagnosis or introduction of palliative care to their child.

2016

The charity made 30 one-off grants of £1,000 to families caring for child cancer patients, in 2016. At the time, these families were mainly based within the haematology wards at Great Ormond Street Hospital, the remainder were allocated with the help of our trusted referral partner,  Momentum.

Bianca Effemey, founder and CEO of Momentum wrote to us at the time:

“I can’t even put into words what a wonderful gift Team Margot Foundation is to the families. At first I was not sure how this could be offered or how families would react. I want you to know that I see some of the stress instantly ease from these poor families faces as so often the money is such an issue and one does not like to talk about that as they feel it is wrong to express that on top of everything else that’s happening. You have helped so many people from this and it’s so private. Thank you. You donated funds to a couple of families who have since lost their child; they spoke to me and said it made such a difference and just relieved some of the pressure.”

The following is feedback from Barbara Inglin, a CLIC Sargent social worker based at Great Ormond Street Hospital (there’s also a short video from Great Ormond Street Hospital below):

“The support Team Margot provides is just brilliant because it is sensitive to the fact that when a child is seriously ill, families can have so many different needs and it can be difficult for them to identify the ‘priority’ need; the grants you give provide them with some much needed flexibility and choice! Thank you!”

Vicki & I with Dr Jasper de Boer (L) and Dr Owen Williams at UCL

with Dr Owen Williams (L) and Margot’s haematology consultant, Dr Phil Ancliff (who is also a Team Margot Rower) at our Parliamentary Reception

In addition, a £5,000 grant was made in support of a leukaemia research project run by UCL in collaboration with Great Ormond Street Children’s Charity. This followed a £60,000 Team Margot donation in 2014, prior to the formation of the charity, Team Margot Foundation.

In infant leukaemia, 50% of babies will die in spite of very aggressive chemotherapy. Excitingly, the team has discovered a potential new targeted treatment. Research has shown that around 8 in 10 cases of infant acute lymphoblastic leukaemias (ALL) are driven by MLL (mixed lineage leukaemia) fusion proteins, which is produced inside the cancer cell. Guided by this understanding, Dr Jasper de Boer and his team has found that one drug in particular was extremely effective at destroying MLL fusion proteins in leukaemia cells in the lab and, crucially, halted their growth, killing the leaukaemic stem cells. These are the cells from which the leukaemia grows and are resistant to conventional chemotherapeutic drugs.

Dr de Boer’s current priority is optimising the drug formulation, before being able to commence a clinical trial in humans, however, there is already good evidence that this drug is safe to use in humans, as it has been on the market for many years. We will continue to track progress and update.

Furthermore, a donation of £10,000 was made to Shooting Star Chase, the leading children’s hospice charity that provided a place for Margot’s body to rest, prior to her funeral.

2017

The following year, we saw a massive spike in the demand for these one-off £1,000 grants, which accounted for all available grant funds that year.

The trustees were delighted to approve the grant of £82,000 to families caring for child cancer patients, as we grew our hospital network and word spread that these funds were readily available.

However, as available funds rapidly depleted, the trustees had to take the difficult decision to close all grant making in the third quarter of that year. The trustees then implemented a new grant policy to safeguard against having to disappoint grant applicants in future.

This new policy altered the way in which the Team Margot Foundation makes grants, specifically by relying upon the hospital networks of trusted referrals and making planned allocations to them at the start of each year.

2018

A further £30,000 was granted to an additional 30 families plus the trustees also made the decision to grant a further £2,000 to support a collective of sickle cell patients who actively recruit blood donors from the Black, Asian, Mixed Race and Minority Ethnic communities.

Specifically, there is an urgent need for an additional 40,000 black blood donors, because they are most likely to carry the much needed RO subtype of blood, which sickle cell patients need to remain clinically well.

2019

The charity allocated a further £34,000 to families caring for child cancer patients, via our now established network of eleven hospitals.

2020

Last year, Team Margot Foundation was able to allocate 31 one-off grants of £1,000 to families caring for child cancer patients prior to the significant impact of COVID-19 on donations received by the charity. The need for these ’emergency grants’ became ever more acute during 2020, owing to the pandemic.

During this time, the trustees have received more lovely feedback from our hospital networks, for example:

“Thank you so much to you and everyone at Team Margot for the incredible support you have provided once again this year to families we work with. It makes such a difference for the families and has helped alleviate some really complex and difficult circumstances for them, allowing parents to focus their time and energy on the child undergoing treatment and their siblings, rather than having to worry about financial constraints.”

“We are very grateful for your very generous donations to our families. We try to give it to families who really need help and who would never ask either. One of my families whose child was very poorly at home were very overwhelmed when they received the money and they treated themselves to a coffee machine (which was something they would never have been able to afford) as they rarely left the house. I think for our families it is such a large and generous amount of money that can only help them, especially in these times when COVID also makes life more difficult.”

2020 proved to be a challenging year for all charities, including Team Margot Foundation.

The charity has commissioned an impact survey, working with our stakeholders and once this exercise is complete, the trustees will review to what extent it is possible to continue the grants programme for 2021.

To take part in our impact survey, just click this link : https://forms.gle/ryaro9mNNeNcPboY9

Team Margot Foundation has no employees nor paid advisers and accordingly there are no salaries, nor expenses paid by the charity. The 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.

Should you wish to make a financial donation to Team Margot Foundation, please either click here or on the image above. Thank you.

Should you wish to fundraise for Team Margot Foundation, the charity is registered here on Virgin Money Giving. Thank you.

Making Financial donations and fundraising for Team Margot Foundation 👉

A massive THANK YOU to everyone at Parkdean Resorts for your fantastic ongoing support.

Wonderful people across the entire business, getting out there in support of the cause. This video captures some of the spirit, fun and achievements by Parkdean Resorts in support of Team Margot Foundation. The Parkdean Resorts team raised a total of £9,665 through their generosity.

On behalf of all our beneficiaries, thank you. 🙏

Team Margot & Parkdean Resorts

Together, saving lives

#MilesForMargot

Over the past 4 weeks we have been posting ‘Works of Heart’ from the HeartatHome.org project. We want to thank everyone for doing their bit during lockdown and in particular, having regard for and protecting the most vulnerable, who are still shielding.

There are even more Works of Heart which we haven’t shared and the collection is growing – you can even add your own too. Please take a look at HeartatHome.org share your favourites on social media and/or post them on your front door at home, or in your window.

The initiative also highlights and supports the law change around organ donation in England that came into force on 20 May this year, and which means that all adults in England will be considered to have agreed to be an organ donor when they die, unless they have recorded a decision not to donate, or are in one of the excluded groups. You still have a choice, so please register & record your express decision here: https://www.organdonation.nhs.uk/register-your-decision/

Importantly, take time to discuss your decision – whatever that may be – with your loved ones.

Very few people die in circumstances where organ donation is possible and many people don’t realise that their family’s support is needed for organ donation to go ahead.

Fewer than half of families agree to donation going ahead if they are unaware of their loved one’s decision to be a donor. This rises to over nine out of 10 when the decision to be an organ donor is known.

Don’t leave it too late to talk about organ donation.

While transplants are still continuing to happen, the number of transplants taking place is significantly diminished. Organ donation will not go ahead, if a potential donor is known to have, or is suspected of having, Covid-19.

The decision to donate your organs is yours. Talk to your loved ones to make sure they know how you feel.

Thank you 🙏

Team Margot
Together, saving lives

#togethersavinglives

On behalf of all at Team Margot, I am delighted to share the fantastic news that the UK’s largest holiday park operator, Parkdean Resorts has selected Team Margot Foundation as its first corporate charity. 

With 67 parks located in unrivalled locations, Parkdean Resorts is the UK’s largest holiday park operator and sells over 500,000 holidays and short breaks annually.

Steve Richards, Chief Executive Officer of Parkdean Resorts

Steve Richards, Chief Executive Officer of Parkdean Resorts, said:

“Everything we do at Parkdean Resorts is centered on creating happy family memories for our customers and holiday home owners, so it was an easy decision to adopt Team Margot as our chosen charity for 2020.”

“Our team of 7,000 people located throughout the UK is looking forward to working closely with Team Margot to help raise awareness and funds for such a brilliant cause. We have a wide range of activities planned and are unashamedly ambitious about helping Team Margot positively impact families during their time of need. Supporting families, helping children and being proactive in the battle against children’s cancer is something we can all get behind.”

It’s thrilling for Team Margot Foundation to have such an exciting & comprehensive programme of events being lined up with Parkdean Resorts and we look forward to sharing more of what’s in store, in due course.

Team Margot
Together, saving lives

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

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 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. 

This 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

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

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

Donors talk about their stem cell & bone marrow donation experiences

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

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

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