Margot, July 2014

When our 14 month old daughter, Margot was diagnosed with a rare blood cancer, doctors told us that she needed a stem cell transplant to stand the best chance of survival. Prior to that, I hadn’t heard about stem cell transplantation, nor did I appreciate how Margot’s mixed family heritage would play a vital role in the donor / patient matching process. Because nothing can happen without a donor. 

The search for Margot’s donor began with her siblings, but neither of her brothers were a match. To try and better understand what was involved, Vicki and I met with Dr Daniel McCloskey, a tissue typing expert. We wanted to understand whether it was possible to target specific communities to improve the chances of finding Margot’s genetic twin. We soon learned that in her case, it wasn’t.

Margot on her second birthday

A “suitable match” was eventually found and Margot  had a stem cell transplant a few months later. Margot  relapsed shortly after and died 8 months post transplant. 

I learned that Margot’s mixed heritage was the key obstacle to finding her a “perfect” tissue-type match, because of the lack of diversity on the worldwide stem cell registers.

I found the period of time between Margot’s diagnosis and transplant  extremely unsettling, being fraught with fear, uncertainty and doubt. Vicki and I were trying to care for Margot and balance family life at home alongside hospital commitments, all the while campaigning to encourage as many people as we could to join the stem cell register. 

Peter with his wife, Jen and sons, Max and Seb

In Margot’s case, this period of time was around four and a half months. For Peter McCleave, it has been seven years. And he is still looking for a stem cell donor match today.

In December 2019, Team Margot Atlantic Rowers embarked on The Talisker Whiskey Atlantic Challenge, a 3,000 mile rowing race with Peter at the centre of the campaign

Peter  was diagnosed with myeloma, an incurable blood cancer, in 2017. We met about a year later and have been like-minded, kindred spirits since. 

I have an enormous admiration for Peter and can only imagine how the fear, uncertainty and doubt that I experienced during Margot’s donor appeal is heightened for Peter and his family, because Peter is himself the patient and because his search has been such a huge part of his life, and for so long.

Registering people as stem cell donors with Peter in La Gomera, prior to the start of the Talisker Whiskey Atlantic Challenge

A great deal has been written about Peter and rightly so. He is a driven, high performance individual with a mixed heritage that remains the key obstacle to finding his own matching donor. However, that hasn’t stopped him from trying.

When Peter was a member of the Stem Cell Diversity Group, part of the NBTA

Peter has signed up more people to the stem cell registers than almost anyone, anywhere, with his 10,000 donors campaign chalking up around 100,000 more donors onto the registers than it first set out to achieve. The single exception that I’m aware of being the gentleman that founded DKMS 30 years ago; it’s now the largest and most successful stem cell register in the world. Fitting then, that Peter is now managing director of DKMS UK.

Our 2019 Atlantic Rowing campaign vehicle – see video below. Peter with Dr Daniel McCloskey, who became a trustee of Team Margot Foundation

Peter is English, Irish and Macanese (his father’s maternal family hail from Macau). A few months ago, Peter told me of his plan to visit Macau and invited me to join him. He has said that this will be the last of his 10,000 donor projects, and a final chance for him to attempt to find a match for himself.

At the DKMS Gala with Orin Lewis OBE

The idea is for him to spend 10 days in the region campaigning, promoting, presenting and hopefully through the Macau Blood Transfusion Centre, registering people as stem cell donors. Today, I am flying out to join him for a few days, to help in a supporting role / in whatever way I can.

By publicising the need for more donors within the Macanese community and by running a focussed campaign – something we weren’t able to do for Margot – there’s still a chance Peter could find his stem cell match. But regardless of whether a match is found for him, this latest campaign will help spread awareness about the importance of growing diversity on the stem cell donor registries for patients like Peter, Margot and others with mixed heritage – and perhaps even you.

Team Margot
Together, saving lives

In 2015, Team Margot Foundation set an ambitious goal: the doubling in the size of the UK stem cell registry to 2.2 million potential donors and the charity highlighted the urgent need for increased representation from ethnic minority and mixed-heritage backgrounds. The aim wasn’t simply to reach a number; it was to create a sustainable, focused registry capable of meeting the needs of all UK patients, especially those from underrepresented communities.

Confusingly, ‘The Anthony Nolan and NHS Stem Cell Registry’ is actually a collective of four independent organisations comprising two charities, namely Anthony Nolan and DKMS UK, plus the NHS Stem Cell Donor Registry (which is part of NHS Blood and Transplant) and the Welsh Bone Marrow Donor Registry (WBMDR). For the purposes of this article, I shall simply refer to The UK Registry.

According to the ‘State of the Registry 2023-2024’ report, the UK Registry currently stands at approximately 2.37 million potential donors, having exceeded Team Margot’s 2.2 million headline target in 2021/22. The majority of this top-line growth is thanks to DKMS UK, which has emerged as the main driver of growth, promoting the use of buccal swabs in the UK and helping to transform the UK stem cell landscape. DKMS has contributed over 1 million donors since its arrival in the UK in 2013 and now makes up 42% of The UK Registry. Anthony Nolan, NHS Stem Cell Donor registry and WBMDR, represent 38%, 16% and 3% respectively.

Although this overall increase is very welcome, the headline figure masks ongoing challenges; the vast majority of the donors that make up The UK Registry are predominantly White and Northern European (81.5%). Reviewing the annual reports of The UK Registry also shows a disturbing decline in the absolute numbers of new donors made active and in particular minority ethnic donors made active:

                                  New Donors                       Ethnic Minority

2020/21                       232,084                                   31,657

2021/22                       137,120                                   24,516

2022/23                       126,302                                   24,815

2023/24                       100,382                                   21,349

Patients from mixed-heritage and ethnic minority backgrounds still face significant barriers in finding compatible, potentially life-saving donors, and the UK remains heavily reliant on importing healthy donor stem cells from international stem cell registries, to try and meet these patients’ needs.

In 2010, there was a plan to transform the chances for those from ethnic minority backgrounds by growing the UK Cord Blood Bank. The stem cells from umbilical cord blood offer a particular advantage in that the degree of match with the patient’s tissue type does not need to be perfect. Professor Charlie Craddock, Chair of the UK Stem Cell Strategic Forum said: “…a UK cord blood bank of 50,000 units, would allow transplants to be performed in 400 patients a year who currently lack a donor…”. Today, the UK Cord Blood Bank sits at barely over 28,000 units, so this initiative has not delivered as planned.

So, despite the growth in The UK Registry, patients from ethnic minority and mixed-heritage backgrounds still face much longer wait times and lower odds of finding a match than their White counterparts. Finding a suitable domestic match within The UK Registry is often not possible, leading to an increased reliance on the more costly and time-consuming stem cells imports from international registries. Domestic donor stem cells are significantly cheaper and should be provided far more rapidly than stem cells from overseas, time being a critical factor for many patients requiring a stem cell transplant.

Achieving a sustainable, domestically focused registry requires not only sustained recruitment, but also a commitment to recruiting donors who reflect the UK’s diverse population. Sadly, recruitment from these communities has been more challenging owing to numerous factors, including cultural and religious issues and historic systemic racism within UK healthcare. However, without this focus, the UK will continue to heavily depend on overseas registries to fill the gap, a solution that is neither timely nor cost-effective.

The headline figures conceal the attrition rate, which adds to this challenge. Every year, tens of thousands of registered donors leave The UK Registry; donors are removed from the register when they reach the upper age of 61 years old, develop a medical condition that precludes them as a donor or if they have requested to be removed. So, the UK must improve both recruitment and retention, particularly among younger and ethnically diverse donors. Building a self-sufficient donor base within the UK is essential for reducing dependency on donors from overseas registries. In 2023/24, 72% of UK stem cell transplants were performed with donor stem cells from overseas stem cell registries. In 2017/18 this figure was 58%.

Over a third of children in primary and secondary schools identify as being ethnic minority or of mixed heritage background. This means that the ethnic demographics of the UK population will continue to alter significantly alongside the patient ethnic demographics, which will have major impacts on the stem cell provision requirement for that population. The challenges are ever more complex and difficult.

While evolving cellular technologies may provide new treatment options for patients, they cannot be considered a “magic bullet”. Realistically, significant numbers of unrelated donors will always be required for many varied stem cell treatment options.

To read the NBTA SCDG proposal, click here or the image above

Three years ago, Team Margot was instrumental in setting up and then working closely with the Stem Cell Diversity Group (SCDG) – a part of the National BAME Transplant Alliance (NBTA) – and was heavily involved with the formal proposal made to the Chair of the UK Stem Cell Strategic Forum and the members of the Aligned Registry in May 2023. This proposal calls for a greater proportion of UK recruits to be from ethnically diverse backgrounds and has been presented by members of the SCDG both in writing and in person. Unfortunately, the positive change and constructive progress that we collectively wish to see remains lacking.

Indeed, concerns about the massive health inequality faced by non-white blood cancer patients in need of a stem cell donor are not allayed by evidence submitted by NHSBT to the APPG Inquiry. In their submission, NHSBT states that “…stem cell registries need to ensure they have service provision income to support growth …” and that “…a donor strategy that is disproportionately biased to ethnic minority recruitment in percentage terms would be financially unsustainable.”

To summarise, commercial imperatives appear to influence UK stem cell recruitment strategy and inequity is ‘baked in’.

Our core mission remains as relevant as ever, and as the charity, Team Margot Foundation winds down towards the end of this calendar year, we intend to continue campaigning much as it all started, simply as Team Margot.

__________

Team Margot’s mission is to help save and improve lives by educating, inspiring and motivating people, especially from ethnically diverse communities, to register as blood, organ and  stem cell donors.

Team Margot is a proud member of the National BAME Transplant Alliance (NBTA) and the Stem Cell Diversity Group (SCDG).

#TeamMargot #TogetherSavingLives

Data sources:

State of the Registry 2023-2024

State of the Registry 2022 – 2023

State of the Registry 2021- 2022

State of the Registry 2020 -2021

Anthony Nolan and NHS Stem Cell Registry Annual Review 2014

Anthony Nolan

NHS Stem Cell Donor Registry

WBMDR

DKMS UK

2023 All-Party Parliamentary Group Inquiry and evidence submissions

Dear Friends and Supporters

Today, we find ourselves at a poignant crossroad in the journey of Team Margot Foundation. Over the last decade, thanks to your unwavering support, we have achieved remarkable strides in donor advocacy and health equality. And we have helped save many lives. The profound impact we’ve managed to make together fills us with immense pride and gratitude.

However, after much reflection and with heavy hearts, we have made the difficult decision to begin the process of winding down the charity. Nothing lasts forever, and as a charity, we believe we have reached a natural conclusion, having achieved as much as we possibly could. This decision comes at a time when the demands of our ambitious projects and the shifting political landscape call for new energy and expertise that surpass what we can currently offer.

Our commitment to the mission we set out on remains as strong as ever.

While the charity, Team Margot Foundation is drawing to a close, our personal and individual dedication to these causes will continue, albeit outside the formal structure of a charity. Team Margot will continue to advocate for donation and fight the health inequalities that minority ethnic and mixed heritage patients face with transplant and transfusion treatments.

Indeed, the Team Margot community that you represent will continue in all our hearts, minds and most importantly in our positive individual actions. Nadia, the trustees and I are enthusiastic about the next chapter, where we can balance our personal commitments with our passions in more sustainable ways.

All this speaks to Margot’s ongoing legacy, not least that many lives have been saved and are still being saved, because of people like you, who signed up to the stem cell register during and since Margot’s appeal, who have registered as organ donors and who started giving blood & platelets as a result of the work of Team Margot.

It’s always amazed me how simply talking about donation can inspire people to either become donors or to donate more frequently, actions which can lead to lifesaving consequences.

As we plan for a responsible and thoughtful transition, our trustees will focus on ensuring that the remaining funds are used closely in alignment with our goals. We will work to make decisions that best serve the interests of those we aimed to help.

Click image above, or here to view and download report

Team Margot Foundation was instrumental in setting up the All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion and provided secretariat services to the APPG for around 18 months. During that time, the Group held an inquiry, a key output being the “Where Are Our Nation’s Donors?” report, which serves as another lasting legacy from our efforts. The charity leaves behind a detailed blueprint that outlines all the areas needing urgent attention to effect positive change. This document will serve as a guide for future initiatives, ensuring that our collective work continues to inspire and facilitate improvements in donor advocacy and health equality.

Earlier this week, we were pleased to assist NBTA, The National BAME (Black, Asian, Mixed Race and Minority Ethnic) Transplant Alliance charity, in reconstituting the APPG. The new Group Chair is Bell Ribeiro-Addy MP and NBTA, will provide secretariat services, led by Orin Lewis OBE.

Thank you once again, from the bottom of our hearts, for your kind and generous support, encouragement, and engagement over the years. It has been a privilege to work alongside so many of you, and we feel proud of the community we have built together.

Personally speaking, this work has been one of the best things I have done in my life, bringing a sense of purpose, accomplishment and post traumatic growth that has positively impacted many lives. It has also been one of the most challenging.

With all our love, respect, and gratitude

Yaser and Nadia

For and on behalf of
Team Margot Foundation
Together, saving lives

x

Please click on the relevant image below to access our photo & video archive.

Celebrity photos

Margot photos

Team Margot photos

Videos

Ten years ago, when Margot needed a bone marrow transplant, the world felt a little different. The worldwide stem cell donor registry was about half the size it is today. That’s a sobering thought. Back then, Margot, like so many others in a similar situation, was racing against time, hoping for a match, a chance. Our family and community (Team Margot) came together to campaign tirelessly, shining a spotlight on the importance of registering as a donor. “You might save a life” my wife and I said “and it could be our daughters.” Team Margot weren’t just advocating for Margot; Team Margot was advocating for everyone who faces the desperate need for a transplant.

A decade has passed since then, and the progress is heartening. The worldwide stem cell registries have grown exponentially (it has almost doubled) and there are essentially now 43 million registered stem cell donors worldwide. Every year, more and more people are selflessly stepping forward to offer a part of themselves, sometimes literally, to save someone they may never meet. It’s a reminder of the power of community and collective action.

Today, it’s appropriate to pause and say thank you – again and again and again. Because the simple act of saying “thank you” to every donor means we acknowledge that behind every registration is a story, a decision, and an act of love. The gratitude doesn’t fade with time, and nor should it.

To every single person who has signed up to a stem cell register, especially during the past ten years, thank you. You are the hope that people like Margot, and countless others, have clung to in their darkest hours. The simple fact that there are now millions more donors on the register is a testament to the fact that, when asked, the world answers.

As we look to the future, it’s important to remember that while we’ve made significant progress, there’s still so much more to do. The challenge now is not just about numbers – though we need those to continue growing – but it’s also about diversity. For some patients, finding a match remains painfully elusive, especially if they are from minority ethnic backgrounds, or like Margot, they are mixed heritage. 

This needs to change, and it can, with continued awareness and action.

So, as we celebrate ten years of World Marrow Donor Day, let’s take a moment to look back at how far we’ve come. And let’s pledge to keep going, so that in the next ten years, even more lives can be saved.

Thank you all so much again.

Yaser, Margot’s father
Team Margot
Together, saving lives

#WMDD24, #WMDD, #thankyoudonor, #wmddthrowback #cheersto10years #togethersavinglives #TeamMargot

The United Kingdom stands at a unique intersection of cultural and demographic trends unlike any other developed nation. With the largest proportionate population of mixed heritage individuals in the developed world, the UK’s ethnic landscape is a relatively recent phenomenon, largely emerging since the 1960s. Unlike countries like South Africa, Brazil, and the USA, where the mixing of ethnicities occurred over a century ago, the UK’s demographic evolution presents fresh challenges that are only now beginning to manifest in public services and societal structures.

This demographic shift positions the UK as a global forerunner, grappling with issues that many other countries will likely face in the future. We are witnessing the first wave of a shift that could define demographic issues worldwide in the 21st century. As such, the UK’s experience and how it navigates these challenges will set precedents for others. Central to this is London, not just a capital city but a global melting pot where ethnicity, culture, and faith intersect more visibly and vibrantly than perhaps anywhere else in the world.

This diversity, whilst a strength, also brings to light significant challenges in healthcare. Originally created in 1948 to cater to the needs of a predominantly white population, the NHS today struggles to provide adequately for the whole population. More than 75 years later, a stark inequity in healthcare exists for 20% of adults in the UK who are mixed heritage or from an ethnic minority, and more ominously still, for more than a third of all children in primary and secondary schools.

Lives are being lost—and this situation is set to significantly worsen.

This health inequity is most acute when it comes to transplantation and transfusion treatments. Children of mixed heritage in the UK are at the forefront of this emerging need. They often face a higher risk of conditions requiring organ transplants and blood transfusions. The capacity to meet these needs is symptomatic of a broader issue: the UK lacks a coherent strategy to address the unique healthcare requirements of its changing demographic.

The stark reality is that whilst the UK is pioneering in facing these challenges, it does so without the robust data, policies, and strategies that are necessary to navigate this complex terrain effectively. The need for a strategic approach is critical, not only to address current gaps but to prepare for increasing future demands.

Click image above, or here to view and download report

The findings of the All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion underscore this urgent need and the shortcomings in healthcare. The group’s inquiry last year reveals a troubling gap in our healthcare system’s ability to serve the ethnically diverse population effectively. Mixed heritage and ethnic minority communities face significant delays and difficulties in accessing essential transplantation and transfusion services, exacerbated by a dire shortage of suitable donors. These communities are more likely to require donors yet find a devastating scarcity when needed most.

The APPG report “Where are our nation’s donors?” calls for immediate and sweeping changes, recommending the appointment of a minister for transplant and transfusion health inequalities, the establishment of an equality tsar, and rigorous reviews of all organisations involved in the transplantation and transfusion pathways. These steps aim to ensure that the public health system is accountable and that outcomes improve across all ethnic groups.

Drawing from poignant insights shared by Professor Gurch Randhawa, it is evident that while the NHS was historically a pioneering healthcare system, its current structure fails to protect the most vulnerable. As Prof. Randhawa noted during the pandemic, ethnic minority communities continue to face significant risks and barriers within the healthcare system, such as inadequate protection from COVID-19 and poor access to essential personal protective equipment (PPE).

With the new government, there emerges a unique opportunity to address these deep-seated issues. The Labour Party, with its foundational commitment to identity and social justice, is ideally positioned to champion these necessary reforms and review them to meet the Equality Duty.

Labour’s broader healthcare strategy, which emphasises prevention, equality, and comprehensive care aligns with the needs outlined in the APPG report. For example, conditions such as hypertension and diabetes, if better controlled, would not only improve quality of life but could also significantly reduce the demand for kidney transplants—a critical issue given the scarcity of suitable donors for ethnic minorities.

By taking a lead on these issues and restructuring parts of the healthcare system to be more inclusive and effective, the Labour Government can demonstrate its commitment to its principles of equity and justice. The demographic changes in the UK are not transient—they will shape the future of the nation and by addressing these issues proactively, they would not only better serve the urgent health needs of the population but would also set a global standard for how multicultural societies can equitably manage their healthcare systems.

Achieving this requires bold leadership and a commitment to transformative policies that go beyond mere adjustments. It calls for a systemic overhaul that places equality and data-driven decision-making at the heart of healthcare planning.

This is not just a matter of policy but is a profound duty to the future of the country – it’s about crafting a legacy of inclusivity and foresight, ensuring that every citizen, irrespective of their ethnic or cultural background, has equitable access to healthcare services.

And that’s a moral imperative that Labour cannot afford to ignore.

Today, on World Blood Cancer Day, we stand together to acknowledge the immense challenges faced by those battling blood cancers and to reaffirm our commitment to saving lives through increased awareness and donor registrations.

Blood cancer has touched many lives, including my own family’s. When my daughter Margot was diagnosed with leukaemia, my family embarked on a journey of hope and determination to find a matching donor. This journey, filled with highs and lows, led to the creation of Team Margot. Although Margot is no longer with us, her legacy continues to inspire our mission to encourage more people to register as stem cell and bone marrow donors.

The fight against blood cancer is not just a medical battle; it is a societal one. For too long, the focus of awareness campaigns and donor drives has predominantly catered to a white audience, overlooking the critical need for diversity in donor registries. This disparity means that patients from mixed heritage and ethnic minority backgrounds have a significantly lower chance of finding a suitable donor match.

One in five people in the UK is of mixed heritage or ethnic minority, a figure that rises to one in three among school-age children. This demographic reality necessitates a shift in how we approach donor recruitment and education. We need to ensure that our messages reach and resonate with all communities, fostering a culture of donation that reflects the diversity of our society.

Educational programmes, such as our Mayrrow programme which has been running this month, play a vital role in this mission. By partnering with schools and community groups, we aim to instil the values of generosity and community spirit from a young age. When children learn about the impact of stem cell and organ donation, they not only become potential future donors but also influence their families and communities to consider registration. 

Today, let us take a moment to remember those who have lost their lives to blood cancer and those who continue to fight. We can honour their struggle by taking concrete steps to support them. If you haven’t already, please consider registering as a stem cell or bone marrow donor. Your decision could be the lifeline that someone desperately needs.

I want to extend my heartfelt gratitude to all our supporters, volunteers, and partners. Your unwavering dedication makes a world of difference. On this World Blood Cancer Day, let’s pledge to continue our efforts with renewed vigour and hope, knowing that together, we can save lives.

On behalf of everyone fighting blood cancer, and for a future where every patient finds their life-saving donor match, thank you. 

Team Margot
Together, saving lives

In an unprecedented move, over 110 experts, individuals and organisations have signed an open letter to the Prime Minister (co-signatories listed below), urging immediate actions to address the shortage of organ, blood and stem cell in the UK. Spearheaded by the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion, the letter calls for vital reforms to save lives and improve health outcomes for ethnic minority and mixed heritage communities.

The letter outlines three recommendations for the government: improved governance and accountability through a review of transplant pathways; enhanced data reporting and transparency to identify health disparities; and increased education and awareness to highlight the importance of donation. These recommendations come in the wake of the “Where are our nation’s donors?” report launched in December 2024, which sheds light on the significant challenges faced by patients from mixed heritage and ethnic minority communities in accessing life-saving treatments in the UK.

Sarah Olney MP, Group Chair

Emphasising the need for urgent action, Sarah Olney MP, Chair of the All-Party Parliamentary Group said, “The unity and diversity of the signatories of this letter demonstrate the widespread recognition of the issues at hand and the collective will to address them. We are at a critical juncture where action can lead to significant improvements in health benefits, save many lives, and reduce the financial cost to the British taxpayer.”

The letter requests a meeting with the Prime Minister to discuss the implementation of the Inquiry’s recommendations and to consider direct actions for immediate improvements.

The signatories, ranging from medical professionals, patients, and donor families to Members of Parliament and celebrities, represent a broad cross-section of the UK’s population. They stand together in their commitment to improving health outcomes and equity of access to treatment across the UK.

“We believe that with coordinated effort and strong leadership, significant progress can be made,” Sarah Olney MP added. “These steps will not only improve the lives of those urgently in need of transplant and transfusion treatments but also contribute to a more equitable and effective healthcare system for all.”

The APPG for Ethnicity Transplantation and Transfusion eagerly awaits the Prime Minister’s response and is ready to work alongside the government and other stakeholders to implement these crucial changes.

For further information and media enquiries, please contact the Group Secretariat: Yaser Martini on 07770672559 / appg@teammargot.com

______

We, the undersigned are committed to improving health outcomes and equity of access to treatment in the UK and are writing in unity for your support and to draw attention to crucial issues in the field of blood, organ and stem cell treatments, which concern in particular, the nation’s mixed heritage and ethnic minority communities that represent 1 in 5 UK adults and 1 in 3 school children.

The recently published report by the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion entitled “Where are our nation’s donors?” (attached) provides a comprehensive overview of the challenges and inequities faced by patients from these communities in accessing life-saving treatments.

We believe that the recommendations of the inquiry report, which are within the remit of your Government, will lead to significant improvements in health benefits, and save many lives and, improve efficiencies in our healthcare system and reduce its financial cost to the taxpayer. The three headline recommendations are:

•Improved governance and accountability via a review of transplant pathways;

•Improved data, reporting and transparency to identify health disparities;

•Improved education, awareness and activity to highlight the importance of donation;

We understand the nature of the complexities and challenges in addressing these issues but believe that with coordinated effort and strong leadership, significant progress can be made. These steps will not only improve the lives of those urgently in need of transplant and transfusion treatments, but will also contribute to a more equitable and effective healthcare system.

On behalf of the undersigned and as Chair of the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion, I request a meeting with you, at your earliest convenience, to discuss this critical healthcare matter of national importance and to consider the direct actions and steps that can be taken to save and improve many more lives across our nation, especially those from the ethnic minority and mixed heritage communities.

We eagerly await your response.

Yours sincerely,

Sarah Olney
Member of Parliament for Richmond Park
Chair of the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion

Co-signed by:

BLOOD DONATION: Click image above to watch video 👆

I am writing this blog post specifically for the blood and platelet donors who are attending the NHS Blood and Transplant Blood Recognition Ceremony in London, later today (I have the privilege of speaking) – however whoever you are, if you live in the UK, you can also support our work by emailing your local MP too:

Hello and THANK YOU so much again for being a donor and for taking this first step in supporting our work.

Congratulations on receiving your blood recognition award for 100 blood donations and 250 platelet donations.

Please write to / email your local MP and ask them to support the work of the APPG in 3 easy steps:

What’s it like ? STEM CELL DONATION Click image above 👆

1. find the name and address of your local MP, by entering your postcode here: https://members.parliament.uk/FindYourMP
2. explain why this cause is important to you – feel free to use / adapt / copy and paste the letter below or indeed write something that is more relevant to you
3. fill in your details (see bold font below) and send

Team Margot
Together, saving lives

________

Dear Your MPs Name

I am writing to you as my MP to ask you to support the new All-Party Parliamentary Group on Ethnicity, Transfusion and Transplantation.  This subject is extremely important to me because enter your personal involvement

click the image above to hear two fathers talking about ORGAN DONATION 👆

I recently attended a blood recognition ceremony and heard a talk given by Yaser Martini from the charity, Team Margot Foundation. The charity is Secretariat for the abovementioned APPG (see: teammargot.com/appg), which published the inquiry report “Where are our nation’s donors?” in the House of Commons on 4 December 2023.

The report says that lives are being lost because of a lack of ethnic minority and mixed heritage donors. The publication of the report follows an inquiry held by Officers of the APPG – Sarah Olney MP, Jackie Doyle-Price MP, Rt Hon. Mark Tami MP – in 2023. The inquiry received 54 pieces of written evidence and held two oral evidence sessions with expert witnesses.

The report says that the UK’s ethnic minority and mixed heritage population face a double whammy of inequity as they are more likely to need donors due to conditions which disproportionately affect them, such as sickle cell and kidney disease, but less likely to find well-matched donors on the blood, stem cell and organ donor registers. This is particularly true for patients in need of stem cell transplants for the treatment of blood cancer, where matched tissue type (most often found in donors from a similar ethnic background) is critical to successful outcomes.

Click image above for a thank you from Margot 👆

Key recommendations include:

• Improved governance and accountability – with a new minister to be appointed for transplant and transfusion inequalities, an equality tsar to galvanise action and a ministerial review of all organisations and national charities along the transplant and transfusion pathway
• Improved data, reporting and transparency – with a roundtable to be convened by the Race Health Observatory to consider data recommendations made, a review by the Department of Health and Social Care of the strategic objectives and financial imperatives behind the targets for all forms of donor recruitment and a review of the Organ Donor (Deemed Consent) Act 2019 to understand the impact of family’s rights to overturn donors wishes, with a particular focus on the impact on mixed heritage and ethnic minority donations
• Improved education, awareness and activity – with a review of funding for charities and community campaign groups, and wide action to build a culture of donation across the whole UK population

I would be extremely grateful if you would be willing to join this All-Party Parliamentary Group and support its work. I would also be delighted to meet you in person and discuss the issue which is so vitally important in ensuring that the NHS is able to support all UK citizens, irrespective of their ethnicity.

Every successful donation is family tragedy averted.

Thank you for your help.

Yours sincerely

Your name

Your address (needed to show that you live in the constituency)

Your contact details

L to R: Nadia Martini, Baroness Mobarik, Yaser Martini, Sarah Olney MP (Chair of APPG)

The All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion held it’s Annual General Meeting (AGM) on Wednesday 7 February 2024 in Portcullis House.

Click the links below to view and/or download the following documents:

• Attendance Sheet

• Agenda and minutes of the Inaugural meeting (held on Tuesday 6 December 2022)

• Minutes of meeting held on 7 February 2024

• A report on the activities of the Group during the past year and on the proposed activities during the next

Click here to view or download a copy of the report

• Group Financial Accounts for the period, as presented and signed by the Chair

• Registering the result of AGM

All enquiries: appg@teammargot.com or telephone Yaser Martini on 07770672559

A week ago today, the All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion launched the inquiry report: ‘Where are our nation’s donors?’ with more than 100 people in attendance.

The launch followed a number of meetings with key stakeholders prior to the event and also some good news that Buckinghamshire New University had received funding approval for an evidence based research study on the enablers and blockers to people from mixed heritage and minority ethnic communities becoming blood and stem cell donors.

Included within this post are some photographs from the event. For more photographs and also a list of those who confirmed attendance prior to the launch, please click here.

What do we want to come out of our inquiry?

More donors in general, more donors from mixed heritage and ethnic minority communities in particular, greater visibility of donors within UK society, and for our healthcare services to be attuned to the needs of our whole population.

If you have ideas on what you can do to help the APPG achieve its aims, please get in touch via email: appg@teammargot.com

Thank you.

Yaser

For and on behalf of the Group Secretariat

Click image above, or here to view and download report

The All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion (ETT) today published its report “Where are our nation’s donors?”. This follows an inquiry held by the Chair of the APPG – Sarah Olney MP along with Jackie Doyle-Price MP and Rt Hon Mark Tami MP – earlier this year. The inquiry received 54 pieces of written evidence and held two oral evidence sessions with expert witnesses.

The report says that the UK’s mixed heritage and ethnic minority population face a double whammy of inequity as they are more likely to need donors due to conditions which disproportionately affect them, such as sickle cell and kidney disease, but less likely to find well-matched donors on the blood, stem cell and organ donor registers. This is particularly true for patients in need of stem cell transplants for the treatment of blood cancer, where matched tissue type (most often found in donors from a similar ethnic background) is critical to successful outcomes.

Key recommendations include:

• Improved governance and accountability – with a new minister to be appointed for transplant and transfusion inequalities, an equality tsar to galvanise action and a ministerial review of all organisations and national charities along the transplant and transfusion pathway
• Improved data, reporting and transparency – with a roundtable to be convened by the Race Health Observatory to consider data recommendations made, a review by the Department of Health and Social Care of the strategic objectives and financial imperatives behind the targets for all forms of donor recruitment and a review of the Organ Donor (Deemed Consent) Act 2019 to understand the impact of a family’s rights to overturn donors wishes, with a particular focus on the impact on mixed heritage and ethnic minority donations
• Improved education, awareness and activity – with a review of funding for charities and community campaign groups, and wide action to build a culture of donation across the whole UK population

Sarah Olney MP (Lib Dem, Richmond Park), Chair of the ETT APPG said:

“This is a very thorough and damning report. There has been over a decade of inaction and our first recommendation is that the Government should urgently appoint a minster to drive progress.”

“We heard that data collection is fragmented, and that it does not capture ethnicity in sufficient detail to facilitate the development of a strategy which would deliver a big enough pool of donors to support those needing transplants and transfusions. This is why we recommend the first task for a new minister should be to establish a unified approach to recording ethnicity and religion, so we have completeness and accuracy of data needed to identify donors, evaluate treatments and save lives.”

“Finally, we need to improve education and awareness around donation in diverse communities. For too long, services and communication have been focussed predominantly on a white audience. With one in five of the UK population now mixed heritage and ethnic minority, rising to one in three of school age children, this has to change.”

Jackie Doyle-Price MP (Conservative, Thurrock) said:

“This report highlights what we have known for a long time – that lower rates of donation in some communities is leading to inequality in outcome for those in need of organs and stem cells. This must be tackled in order to save lives. Ministers need to show leadership to break down the practical and cultural barriers to progress.”

Beverley De-Gale OBE, Co-Founder of ACLT and mother of Daniel De-Gale said:

 “In 1996, my six-year-old son, Daniel, was diagnosed with blood cancer. As a person of colour his chances of finding a donor were less than one in 250,000 and he died after a long battle with the disease. This is a very important report because over a quarter of a century has passed since Daniel’s diagnosis and little or nothing has been done to solve the problem.”

Gurch Randhawa, Professor of Diversity in Public Health, University of Bedfordshire said:

“The evidence submitted to the inquiry showed that there are totally unacceptable inequalities for mixed heritage and ethnic minority patients in need of transplant and transfusion treatments, including signs that those organisations responsible for rectifying this situation don’t appear to have a financial strategy which makes proportionate mixed heritage and ethnic minority recruitment viable. Families testified that donors aren’t being found, and donors are invisible in society, which means lives are being lost. Despite these inequalities being known for many years, it was disappointing to learn that so little has been done to address them”.

Yaser Martini, from the charity Team Margot Foundation, said:

 “These are serious issues that don’t just affect healthcare; they affect our wider society in our education system, in employment, our national culture and social inclusion. The APPG aims to serve as a catalyst to break down departmental silos and increase political urgency on these critically important issues, ultimately to save and improve more lives.”

Ends.

______

For more information on the inquiry, the “Where are our nation’s donors?” report and its recommendations, please contact: Yaser Martini | yaser@teammargot.com | +44 7770 672 559

The report was launched today in the House of Commons. For further information about the launch, photographs or interviews, please contact Yaser Martini

About: Team Margot Foundation (charity no: 1160236) provides secretariat support to the All-Party Parliamentary Group (APPG) for Ethnicity Transplantation and Transfusion (ETT) to raise awareness of health inequalities and to promote policy change to help save and improve more lives through greater ethnic donor participation.

APPG Report Where are our nation’s donors?APPG Report Where are our nation’s donors? Further information can be found on the Team Margot website – www.teammargot.com/appg

The All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion (ETT) Executive members are: Honorary President – The Baroness Benjamin DBE OBE; Chair – Sarah Olney MP (LibDem); Vice Chair – Rt Hon Mark Tami MP (Lab); Officers: Feryal Clark MP (Lab), Fleur Anderson MP (Lab), Jackie Doyle-Price MP (Con), Marsha De Cordova MP (Lab), Sir Peter Bottomley MP (Con).

June 2013, pre diagnosis

7th October is Team Margot Donor Registration Day

My late daughter, Margot was diagnosed with blood cancer ten years ago today.

During the early hours of the following morning, Margot arrived at the paediatric intensive care unit in Great Ormond Street Hospital. She was in a perilous condition and urgently needed to be rescued.

Margot was put into an induced coma so that she could receive a platelet transfusion. And because her blood was so riddled with leukaemia, this was quickly followed by an exchange transfusion of red blood cells; effectively, all her blood was removed and replaced by the blood of a donor.

Fortunately, the right blood and platelets were immediately available and mercifully, Margot survived that episode and was brought out of her coma over a week later.

July 2014

Those blood & platelet transfusions saved Margot’s life, but didn’t address her blood cancer. Doctors then told us that Margot needed a bone marrow (or stem cell) transplant to address the leukaemia, for Margot to stand the best chance of survival.

The search for her ‘perfect’ donor match was soon underway; a suitable donor was eventually found in Germany.

Sam Bell, one of many people who donated stem cells, because of Margot. Thank you to all donors 🙏

Initially, during the weeks that followed her stem cell transplant, it appeared as though Margot’s transplant had succeeded.

Unfortunately, the leukaemia returned, at which point Margot was declared incurable.

Some weeks later, to her credit, my wife Vicki (Margot’s mum) raised the prospect of donating Margot’s organs, after her death.  This was a seminal conversation. My instinctive reaction was one of horror and I recoiled at the mere suggestion. However, within a day or so, I had come round to a very different way of thinking and was not just willing, but was positively certain that donating Margot’s organs would absolutely be the right thing for us to do.

We later discovered that this wasn’t going to be possible – because Margot had a blood disorder – however, the really important point here is that Vicki and I had discussed and agreed on what to do. That very difficult conversation helped us to agree on something which seemed so unthinkable.

Now, we irrefutably know how each of us feels about this matter. It might seem counter intuitive and perhaps a little odd, but comfort lies within that understanding.

Team Margot Foundation was set up 3 months after Margot’s death, in her memory and to honour her legacy. The charity was initially a donor recruiter, then an educator and today is the secretariat of an All-Party Parliamentary Group: Ethnicity Transplantation and Transfusion.

Donation remains at the core of what the charity is all about. As Vicki says:

“This could happen to anybody. If you’d be prepared to take a bone marrow transplant, or any other type of organ donation or blood donation, then I feel that people should be prepared to give also… I’d like people to think about that.”

Please sign up TODAY as a donor and encourage others to do the same:

• sign up as an organ donor here

• sign up as a blood donor here

• sign up as a stem cell donor here

Thank you.

Team Margot
Together, saving lives

I was honoured to be invited by Buckinghamshire New University to talk at their ‘Black History Month’ launch event on Monday 2 October 2023, alongside Orin Lewis OBE from ACLT (African Carribean Leukaemia Trust).

Special thanks to Margaret Rioga, who amongst other things heads up the university Race Equality Network and also Vice Chancellor Nick Braisby and all their team for thinking to invite Orin and I to address your University in this way.

Thank you also for the collaborative efforts that we are now working on…

To watch a recording, please see below.

Thank you.

#TeamMargot #togethersavinglives #BHM #TimeToDonate

Tomorrow marks the start of an entirely new month… Orgtober – organ donation education month – however by simply adopting this change in language, you can start TODAY!

Please read the personal Statement from our partner, Roydon Turner, Founder of the Orgamites Programme:

I am thrilled to introduce Orgtober, formerly known as October, our full month dedicated to promoting organ donation education among students, teachers, and families across the world (starting in Northern Ireland and Canada).

While the normal education curriculum will not be affected, this supplementary campaign seeks to breathe new life into organ donation education by: starting earlier, getting more families talking, celebrating the fundamental values that underpin organ donation (kindness, compassion and inclusivity), and having loads of fun while doing all of this!

As the founder of the Orgamites Programme, I am deeply committed to harnessing the power of education to foster positive change and, ultimately, save lives. Our primary goal for the programme is to instil core values such as kindness, compassion, and inclusivity in the hearts of our youth, all while nurturing their understanding of the human body and the vital role organs play in our lives.

If we’re to care about the planet, perhaps we should be equally concerned about each other first. At its core, Orgtober is a catalyst for change through education. We firmly believe that by empowering our children with knowledge, we can reshape societal attitudes toward organ donation. Our mission is clear: to amplify awareness about our organs, ignite crucial conversations about organ donation, and, in the long run, increase the number of life-saving donors.

This initiative is especially crucial because too many individuals, including children, lose their lives while awaiting life-saving organ transplants. Witnessing this suffering is a painful reminder of the urgency of our cause. Orgtober represents more than just a month on the calendar; it symbolises a beacon of hope for those in need.

The Orgamites have already made significant strides in Canada, Greece, and the UK, but

Orgtober elevates our vision to new heights. By launching Orgtober, Northern Ireland and Canada are leading the way in demonstrating to schools, organisations and individuals everywhere that it can be done. Together, we aspire to save countless lives, not just in these countries but across the globe.

One of Orgtober’s most powerful attributes is its ability to initiate conversations that matter. Families often grapple with the profound decision of organ donation without prior knowledge of their loved ones’ wishes. Orgtober aims to change this by encouraging children to initiate these discussions, creating a ripple effect that could save lives in the future.

Join us in this historic educational endeavour as we redefine organ donation awareness, spark life-changing conversations, and reshape the world one classroom at a time.

Roydon Turner

Founder, Orgamites Programme

For educational resources in Northern Ireland, please visit www.organdonationni.info

To learn more about the Orgamites, visit Orgamites.com

Source for statistics on organ donation in the UK: Independent.co.uk

#MightyOrgamites #Orgamites #OrganDonation #OrganDonationNorthernIreland

#DonateLife #CanadianBloodServices #NHSBT #TeamMargot #togethersavinglives

Unbeknown to me, Margot’s big brother, Oscar (16) joined the Organ Donor Register when he signed up for his provisional drivers licence.

Surprised and delighted to see this come in through the post, and during Organ Donation Week too…

Well done Oscar 🙌

At times like this, I remind myself how much you have grown in recent years and since narrating this video:

#organdonationweek #organdonation #organdonationsaveslives #togethersavinglives #teammargot❤️ #teammargot #youcansavealife

_______

Updated September 2023

Since it’s inception and by the end of this calendar year, Team Margot Foundation will have made grants totalling £339,100, 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 £614,100 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.

Since 2019

The charity has exclusively made grants allocated to families caring for child cancer patients, via our now established network of eleven hospitals, as follows:

2019 £34,000

2020 £31,000

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

The need for these ’emergency grants’ became ever more acute during 2020, owing to the pandemic. The charity commissioned an impact survey, working with our stakeholders and following this exercise, the trustees reviewed to what extent it was possible to continue the grants programme for 2021:

2021 £40,000

2022 £30,000 has been allocated to our hospital network, but to date only 8 of these grants have been made, the balance of funds are expected to be deployed prior to 31 December this year.

2023 £30,000 was allocated to our hospital network in January this year, and thanks to unexpected donations from Parkdean Resorts and The Hare & Hounds, East Sheen a further two grants were possible, making a total of £32,000 in grants this calendar year.

Accordingly, by 31 December this year Team Margot Foundation will have made 317 x £1,000 grants to families caring for child cancer patients.

Throughout, the trustees have received more lovely feedback from our hospital networks; a few examples are below:

“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.”

Team Margot Foundation’s grant giving function 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, fundraisers and supporters around the world. Consequently every penny raised and donated in support of this effort will go directly towards families caring for child cancer patients.

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 JustGiving. Thank you.

Making Financial donations and fundraising for Team Margot Foundation ?

Today, on World Blood Donor Day, 13 MPs attended a Parliamentary awareness event, organised by Sarah Olney MP, Chair of the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion.

The event, held to raise awareness of the need to increase the number of registered blood donors in the UK, particularly from minority ethnic backgrounds, was attended by several existing donors, as well as many Parliamentarians and their staff.

The NHS’s Blood and Transplant division is aiming to recruit 140,000 new blood donors this year, with a target to ensure 12,000 of these are from black, asian, mixed and minority ethnic backgrounds. This is particularly important considering the rise in Sickle Cell disease diagnoses, which now number over 17,500 a year, which primarily affect these communities.

Speaking after the event, Sarah Olney MP said:

“It was fantastic to attend the event today to raise awareness of such an important cause. 18% of the UK population and 34.5% of our students are from ethnic minorities, it’s therefore clear that our National Health Service needs to do more to meet their specific health needs.

In blood transfusion, there are major healthcare disparities for mixed and minority ethnic patients. We must remember that without donors, we can’t make the necessary changes.”

#WorldBloodDonorDay #NothingHappensWithoutADonor #ThankYouDonors

Special thanks to the blood donors who took time out of their busy schedules to attend and speak to MPs about their experiences as blood donors: Gideon, Kishma, Lisa & Leigh, Holly, Brenda and Kate.

Gideon has made 28 blood donations to date. He has the Ro subtype of blood which is used to treat sickle cell patients

I was privileged to speak at the Cancer52 Annual All Stakeholder Event in London on 12th October 2022, which was attended by the Minister for Health, Will Quince.

This event was marked by the launch of Cancer52’s report: Taking Action on Inequalities in Rare and Less Common Cancers: Understanding the Issues – which is available here.

The recording of this event was recently released and I’m sharing it with you via this link.

My slot begins at 29:40.

This was the first time I had really spoken publicly about the issues Vicki and I faced in getting an accurate diagnosis for Margot.

Thank you for watching and sharing.

Team Margot
Together, saving lives

Margot’s Auntie Nadia and I attended a Parliamentary Reception in the Jubilee Room at the houses of Commons yesterday, alongside NHS Blood and Transplant, ACLT Charity and The Sickle Cell Society.

The event was kindly hosted by Bell Ribeiro-Addy MP, to celebrate Blood Donation & Black History Month.

Thank you to all who attended:

Ms Thangam Debbonaire MP
Ms Taiwo Owatemi MP
Mr Will Quince MP
Ms Diane Abbott MP
Sir Peter Bottomley MP
Ms Marsha De Cordova MP
Ms Florence Eshalomi MP
Ms Rachel Hopkins MP
Ms Paula Barker MP
Ms Apsana Begum MP
Ms Kim Leadbeater MBE MP
Ms Bell Ribeiro-Addy MP
Mr Bim Afolami MP

In particular, thank you to Lewis Williams and Sam Silver at NHS Blood and Transplant for inviting us & for running such a brilliant event.

Team Margot
Together, saving lives

Shortly after Margot was diagnosed with blood cancer, Vicki and I realised that we had a communication issue. Bad news travels fast and we had quickly become inundated and overwhelmed with enquiries from people who were all asking the same question: “how’s Margot ?”

So we set up a password protected website and asked people to visit the website for the latest update on how Margot was getting on. 

Thereafter, whenever there was something to report, I wrote a new entry. These blog entries included updates on Margot’s treatment & how she was feeling, photographs, videos, medical notes, our thoughts and feelings. In the main, I found recording these updates practically useful and also personally therapeutic, however there were moments when it became a bit of an obligation and a millstone.  

Vicki and I shared these website login details with family and friends who had enquired after our daughter. Sharing Margot’s blog helped bring some semblance of order to an otherwise chaotic time of our lives. 

Margot was diagnosed with blood cancer on 7 October and every year since we have marked this date as the annual ‘Team Margot Donor Registration Day’, to help spread awareness and to encourage action. As a society, we still need many more blood, organ, stem cell and bone marrow donors; this remains the core focus of the charity. 

However, Team Margot Foundation also provides a range of support to families caring for child cancer patients, not least because we know how hard life can be when caring for a sick child. 

As part of this support, we felt there was merit in sharing Margot’s blog more widely. So today, on the anniversary of the date when our world was turned upside down, we are making Margot’s blog publicly accessible. 

We haven’t attempted to pretty this up or change what’s written in any way. It’s clunky, pretty raw and some of it might well make for extremely dull reading. 

However, by sharing this private blog, we hope that other parents and families might find something in Margot’s story that helps them cope a little better, when caring for a child with cancer. 

Yaser & Vicki Martini

margotmartini.co.uk
Username: Journal
Password: GoMargot!
(please note: case sensitive)

“Over the years, those who have seemed to me to be the most happy, contented, and fulfilled have always been the people who have lived the most outgoing and unselfish lives.”

Her Majesty, Queen Elizabeth II 

Platinum Jubilee

2022 

____________

Margot’s father Yaser talks to donors who have given blood 100 times or platelets 250 times at the first NHSBT Blood Donor Recognition Ceremony since COVID

Millennium Gloucester Hotel, London 27 April 2022

Introduction

It’s a very great privilege and honour to have been asked to speak today.

We haven’t met before, but given you’re at this event, I know you all to be very special people. And by addressing you here, I feel as though I have been given an opportunity to try and at least go some way towards expressing my gratitude, and my wife Vicki’s gratitude & thanks to the wonderful people who stepped up and provided for us, when we were in our time of need.

Frankly, I stand here speaking on behalf of all our family and loved ones. And I suspect that I’m also speaking for all the patients out there who receive blood, and their families too – because, of course, the patient and the patient’s family don’t ever get to meet their benevolent & selfless blood & platelet donors.

So this is as close as we’re going to get to saying thank you.

And because you don’t get to meet the patients to whom you donate blood, I hope you might find something in my daughter’s story that helps you relate to some of the desperate circumstances and situations that people find themselves in, when they need blood & platelets.

So what I’m going to do for the next few minutes is give you a brief glimpse into Margot’s story…

Dear Team Margot Supporter 

Team Margot was a desperate reaction to a situation thrust upon our family.

Our progress since forming the charity has been homespun and the trustees recognise that going forward, in order to scale and remain strategically relevant, a more focused plan is required.

We are proud to share with you the Impact Report conducted by Skylark Works and Oxford University that many of you contributed towards – thank you again. This helps us better understand what we have done well and also identifies the “gaps” where we can do better.

To read our Impact Report in full and access the “at a glance” summary and infographic, please click here.

Three Year Strategic Plan

Following the recommendations made in the Impact Report and also a review of Team Margot’s values, vision and mission, we outline below what the charity is seeking to achieve and how we intend to execute our plan from now until the end of 2023.

The goals set, have been agreed by the trustees as ‘stretching’ but achievable over time. They represent the highest level of ambition, given realistic and available resources.

There has been a shift in focus from the early days of simply rallying for more people to join the stem cell register, to one that finds the team working towards educating young people about the importance of all forms of donation, including blood and organ donation in addition to stem cell and bone marrow donation.

In part, this work occurs via an education programme for children of primary school ages, with a particular focus on those from ethnically diverse communities – where the level of those registering as donors is dwarfed by those requiring donations.

Team Margot Foundation
April 2021

Our Values

At all times, we will hold honesty and integrity at the centre of our activities and act in a transparent, ethical and accountable manner.

We aim to be considered a kind, benevolent, and empathetic organisation that enriches the communities we work with.

Through strong leadership, support and a desire to collaborate for maximum impact, we will engender the respect of other charity partners.

As an organisation we are committed to being passionate and purposeful, yet patient, to be as impactful as possible.

Our actions will always be conducted whilst being mindful of our impact on the world at large.

Our Vision

A world where every human being in need, regardless of background, can equally access effective and timely donations of blood, organs, stem cells and bone marrow.

Our Mission

To help save and improve lives by educating, inspiring and motivating people, especially from ethnically diverse communities, to register as donors and to provide a range of support to families caring for child cancer patients.

Objectives

1. Increase the number of Blood, Organ, Stem cell and Bone marrow donors

Lobby for a single, clear set of recruitment criteria for living stem cell & bone marrow donor recruitment in the UK

• To regularly meet with politicians & officials to pursue this goal
• Liaise with the existing UK registers & related stakeholder groups in this regard
• Ensure that Team Margot plays its part in the debates around bone marrow stem cell recruitment in the UK

Improve public knowledge and perception about donations

• “signposting” to accredited information relating to donation, via our various channels
• Regularly sharing information relating to the need for blood, organ, stem cell and bone marrow donations
• Myth busting inaccurate information about donations by sharing clear factual information about donation
• Continuing to contribute to the regular ‘World Marrow Donor Association’ workshops

To influence significant and meaningful change in attitudes towards registration

• By continuing to share Margot’s story
• Sharing information that underscores the need for more donor diversity
• Sharing stories relating to the need for more blood, organ, stem cell and bone marrow donors from ethnically diverse communities
• Introducing and educating primary aged children so that registering as a stem cell, bone marrow, blood and organ donor becomes a rite of passage.

Increase confidence about donations generally

• Sharing both donor and patient “success” stories
• Sharing “donor get donor” stories to help normalise this behaviour

To encourage confidence from people within ethnically diverse communities to talk about, sign up and donate

• by continuing our ongoing relationship with the Peer Outreach Team (part of the Education and Youth Team) at City Hall
• Sharing stories with visuals relating to the patient need within ethnically diverse communities
• Sharing success stories of people from ethnically diverse communities

Deliver an accredited education programme to Primary schools

• by maintaining and improving the existing ‘Giving to help others’ library of educational resources
• by retaining and continuing to build upon our existing relationship with Kidzania, London
• by engaging primary school teachers
• by engaging parents and carers to share the education programme within their children’s Primary schools

To Lobby for mandated education promoting donation in the Primary school curriculum

• To write to politicians and officials in pursuit of this goal
• Liaise with related stakeholder groups in this regard

To “keep the door open” to Team Margot’s ‘Proposal for the collection of Bone Marrow Stem Cells from deceased donors’

• To lobby NHSBT and other stakeholders to include and retain this proposal on their strategic agenda, with the longer term aim of practical adoption

2. Provide support for families or carers of child cancer patients

To continue and expand the provision of emergency grants for families or carers of child cancer patients

• To provide annual grant allocations for 2021 (x40), 2022 (x60) and 2023 (x100) via our hospital network of trusted referrers
• To share the free Parkdean Resorts holiday offer with families and carers of child cancer patients

To provide comfort and hope to families or carers of child cancer patients

• to continue to share Margot’s family story

3. Build the capacity of Team Margot

By seeking “annuity-type funding” to financially support the work of Team Margot Foundation on an ongoing basis

Review the human resource of Team Margot to ensure the capability to deliver the above

• Formulate a plan to deliver ‘Giving to help others’ to the c.23,000 UK Primary schools
• Seek support from our partners at NHSBT to establish what resources might be shared

Deliver the results of the human resource review

• by September 2021

Provide improved communication facilities for stakeholders

• Re-order & make changes to teammargot.com to improve clarity of message
• Communicate clearly what stakeholders and supporters can do to support Team Margot

Review the relevance of communications resources and implement results

• Consider recommended actions arising from our March 2021 Impact Report
• make improvements to ‘Giving to help others’ and Team Margot’s various channels to improve their relevance, monitoring & communication capabilities

Success Metrics

For Team Margot to have an ongoing positive impact on the UK stem cell and wider donor registers

To engage regularly with stakeholders

To recruit more relevant trustees onto the board and in doing so, increase our talent bank, diversity and impact on our mission

Seek to increase our social media audience by 10% each year

Aim to have the ‘Giving to help others’ education programme adopted by the majority of primary schools in the UK

For Team Margot to be recognised as key players in the lobbying for a single, clear set of recruitment criteria for living stem cell and bone marrow donor recruitment

Regular meetings with politicians and officials linked with donation

Using our media channels to regularly share information relating to the need for blood, organ, stem cell and bone marrow donation

Aim to secure “annuity-type funding” to financially support the work of Team Margot Foundation

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

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