May 28, 2024

Reflecting on World Blood Cancer Day: Our Shared Responsibility

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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

Posted in: Journal
May 4, 2024

May the 4th be… Mayrrow !

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Tell every teacher you know about Mayrrow and suggest they download our FREE ready-to-go Mayrrow Resources here: https://bit.ly/MayrrowResources

In this folder your will find:

• Teacher Resources: an overview and all the info you need!

• Mayrrow Films: 3 films under 3 minutes, packed with edutainment!

• The Mayrrow Masterclass Presentation: a lesson in 20-30 minutes max!

• Additional Teacher Resources: activities for the classroom

• Family Resources: Information and fun activities for the classroom

Download our Mayrrow Media Kit here: https://bit.ly/MayrrowMediaKit

In this folder your will find:

• Logo’s and images to use

Announcement Posts (23 April – 1 May)

• Launch Posts (May 1 – onwards)

• 4th of May Post – May the force of Mayrrow be with you!

• Engage Posts (May 7th – onwards)

• Promotional Films in different sizes

Thank you.

Team Margot
Together, saving lives

Posted in: Journal
April 22, 2024

With your help, May is now Mayrrow!

By

In December 2013, Team Margot launched Margot’s appeal for a stem cell and bone marrow donor, the recommended treatment that could give Margot and others like her, the best chance of survival. 

Today, Team Margot is proud to announce a new initiative in partnership with The Orgamites, an education programme that reveals a brand-new month and a global first: Mayrrow, the Bone Marrow and Stem Cell Education Month!

So, go ahead and start using the lingo… every time you mark something in your diary for next month, remember it’s MAYRROW !

Thank you for sharing.

Team Margot
Together, saving lives

__________

For more about Mayrrow, please see below:

THE ORGAMITES CHILDREN’S EDUCATION PROGRAMME ANNOUNCES A BRAND-NEW MONTH AND A GLOBAL FIRST: MAYRROW

In partnership with Team Margot and Giving to Help Others and supported by Gilead and the NHSBT Community Grant Scheme.

Times are not only changing – calendars are too. In fact, go ahead and cross out the month of May entirely. It’s been officially replaced by Mayrrow: Bone Marrow And Stem Cell Education Month, with a host of free education resources available to all teachers in over 24,000 primary schools across the UK from 1 May 2024. For the first time children aged 5 to 11 get to know all about their marvellous marrow, life-saving super cells and their brilliant blood.

Yaser Martini, founder of bone marrow and stem cell awareness charity Team Margot, says: “We’ve committed a whole month to putting bone marrow and stem cells education where it’s never been before: right in the spotlight”.

Why we need Mayrrow?

The ongoing and escalating requirement for stem cell donations has led to an urgent, global need for more awareness and education initiatives – across the board.

According to the latest NHS State of the Registry Report, less than 3.5% of the UK population are on the stem cell register. To date, those of Caucasian heritage have a 72% chance of finding a life-saving stem cell match from an unrelated donor. Those of Black, Asian, or other Minority Ethnic heritage have just a 37% chance.

Yaser Martini, of Team Margot says, “Sadly, there just aren’t enough people on the stem cell register, nor is there sufficient diversity to match all the patients desperately in need of stem cell transplants. At the same time, many primary school teachers don’t feel equipped with the adequate tools and teaching resources to make this complex subject come to life for their students, until now!”.

An early start!

So, while young kids are certainly not old enough to become donors themselves, it’s never too early for them to learn just how mighty their bone marrow, stem cells and blood really are, as well as how they could one day save lives!

Roydon Turner, founder of The Orgamites says: “These resources are specifically for kids between the ages of 5 and 11 and aim to create first a UK, then a global movement of young people who in the short-term, know how mighty their marrow and bodies really are. Over the much longer-term, the hope is that they are more inclined to share these life-saving parts with others and that the classroom conversation will spill into homes–with kids using their pester power toward a good cause: getting more of their parents to consider becoming donors too”.

Dr Daniel McCloskey, Team Margot says, “The future is shaped in our classrooms; by empowering the youth, we plant the seeds of tomorrow’s revolutions. The most transformative eras are always sparked by the fearless vision of the young.”

Mayrrow also aims to end the common misconception that stem cell donations are painful and invasive. To register as a stem cell donor, you need only swab the inside of your cheek. Then, actual stem cell donations (which are only required if a potential donor on a registry matches with someone in critical need) are usually as simple as donating blood, with bone marrow replacing itself within just four to six weeks.

Download our FREE ready-to-go Mayrrow Resources here: https://bit.ly/MayrrowResources

In this folder your will find:

• Teacher Resources: an overview and all the info you need!

• Mayrrow Films: 3 films under 3 minutes, packed with edutainment!

• The Mayrrow Masterclass Presentation: a lesson in 20-30 minutes max!

• Additional Teacher Resources: activities for the classroom

• Family Resources: Information and fun activities for the classroom

Download our Mayrrow Media Kit here: https://bit.ly/MayrrowMediaKit

In this folder your will find:

• Logo’s and images to use

Announcement Posts (23 April – 1 May)

• Launch Posts (May 1 – onwards)

• 4th of May Post – May the force of Mayrrow be with you!

• Engage Posts (May 7th – onwards)

• Promotional Films in different sizes

– ENDS –

About the Orgamites

The Orgamites Mighty Education Programme is a global organ donation and health education programme for kids aged 5-11. It uses educational resources, tools, toys, and tech to inspire and equip more students, teachers, and families everywhere to talk more about organ donation, and to take better care of their bodies, each other, and our world.

Orgamites is also the name given to the team of life-saving organs found in each one of us, they are also known as the ‘mighty organs’ because they represent the organs most needed for donation and transplantation. The Orgamites work closely with children to empower them to become captains of their own health through the lessons, beliefs, and values of the Orgamites Mighty Education Programme.

The Orgamites and the Orgamites Mighty Education Programme were created by Roydon Turner. Creative and production by All Good Co., a Community Interest Company (AllGoodCo.org). Our partners include Live Life Give Life, the Onassis Foundation, Canadian Blood Services, Team Margot, Giving to Help Others, Northern Ireland Donation, the Public Health Agency, the British Transplant Society and European Society for Organ Transplantation (ESOT). Supported by NHS Blood and Transplant, Organ Donation Scotland. Official partner of the ESOT Congress in London, 2025.

This project has been made possible with the provision of a financial grant from Gilead Sciences Ltd.

Discover more at www.orgamites.com

Contact: Roydon Turner

Email: Roydon@allgoodco.org

Phone: +44 (0) 7799583368

About Team Margot

Team Margot has been campaigning since December 2013 however the charity, Team Margot Foundation was officially established in January 2015

Their mission is to help save and improve lives by educating, inspiring and motivating people, especially from ethnically diverse communities, to register as blood, organ, stem cell and bone marrow donors and to provide a range of support to families caring for child cancer patients. Team Margot also provides secretariat support to the All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion.

Contact: Yaser Martini

Email: yaser@teammargot.com

Phone: +44 (0) 7770 672559

What others are saying:

“Directly affected by the devastating impact of a family member in need of a transplant, at a very young age I decided to become a scientist. Today, I am here to use my voice and skills to support one of the most exciting and heart-warming projects I have ever encountered, the Orgamites! Education, compassion and generosity are taught through this educational programme, to make our world better for us and our children!” Dr. Eva Tsaousidou, Postdoctoral Research Associate, Harvard T.H. Chan School of Public Health

“As partners with the Orgamites, we’re thrilled to back their work in educating kids and families on organ donation. These characters simplify a complex topic, engaging children and sparking family discussions that could one day save lives. The Orgamites are crucial to our mission to reduce transplant waiting times and boost organ donations, and we endorse their programme wholeheartedly.” Mandy Venters, CEO, Live Life Give Life

“The Orgamites are a fantastic tool for teaching kids about their health and organ donation, which was never taught in our school until we implemented this fun, free programme. The characters are cute and engaging, and the accompanying materials are comprehensive and easy to use. An incredible health resource for all educators!” Claire Müller, Year 2 Teacher

“This is a real miracle for Greek society and it’s happening now; we didn’t have to wait for 100 years. Roydon Turner and his team are excellent health partners, and we are looking forward to working with them more over the coming years to see a positive change in Greek society.”  Alexandros Morellas, Health Programme Manager, Onassis Foundation

“Since launching in Canada in September 2021, the Orgamites programme has significantly impacted understanding organ donation and fostering community spirit. Garnering positive feedback across the board, it has sparked crucial conversations on organ donation, aligning well with Canadian Blood Services’ mission. The programme’s adaptability and engaging content have proven to be a valuable asset in education and awareness efforts, embodying our values and enhancing our outreach.” – Dr. Graham D. Sher, CEO, Canadian Blood Services

Looking for more mighty teaching resources?

In addition to the Mayrrow campaign, the Orgamites Mighty Education Programme currently has a range of free educational toolkits that teachers everywhere can use to inspire kids to take better care of their health, one another, and the world at large.

Save the date!

Orgtober, formerly known as October, is now Organ Donation Education Month, a month of activities, activations, and events all dedicated to promoting organ donation education among children, teachers, and families the world over. So, watch this space and be sure make some space in your class calendar to let the Orgamites make another mighty impression this Orgtober!

Posted in: Journal
March 20, 2024

Urgent Call to Action for Improving Donor Availability and Transplant & Transfusion Equity in the UK

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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

______

The Rt Hon Rishi Sunak MP Prime Minister
10 Downing Street
London

SW1A 2AA

Dear Prime Minister,

20 March 2024

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:

  1. Alastair Campbell, Writer, Campaigner, Podcaster
  2. Abiola Okubanjo, Action on Blood
  3. Alexander Salussolia MD, Foundation Group
  4. Alexander Wood, Renal Network Manager (North East and North Cumbria)
  5. Alfred Dowe, Grandfather of a bone marrow recipient
  6. Alistair Petrie, Actor
  7. Dr Amos Ogunkoya, TV Presenter, GP and Sports Medicine Specialist
  8. Andrea Brown, Chief Executive, National Kidney Federation
  9. Ash Atalla, CEO, Roughcut Television
  10. Baba Inusa, Chair, National Haemoglobinopathy Panel; Chair, Grants and Research Committee, British Society of Haematology
  11. Baroness Floella Benjamin, OM DBE, Honorary President of Ethnicity Transplantation and Transfusion APPG
  12. Baroness Mobarik CBE
  13. Ben Hampshire, Donor
  14. Ben Jowitt, Donor-in-waiting
  15. Mrs Bahmini Ranjan, Donor
  16. Beverley De-Gale OBE, Co-Founder of ACLT (African Caribbean Leukaemia Trust)
  17. Bianca Effemey OBE, CEO & Founder, Momentum Children’s Charity
  18. British Transplantation Society, Executive Committee
  19. Bronwyn Crockett, Donor
  20. Carrie Scuffell, Transplant Specialist Nurse
  21. Cath Harries, Registered Stem cell donor
  22. Chanel Taylor, Founder, Unsickle My Cells
  23. Chidimma Onyejiaka, Patient and Public Involvement and Engagement Manager, CRN North Thames
  24. Christine Woods
  25. Cynthia Tewogbade, Sickle Cell Advocate
  26. Dr D S Richardson, Consultant in Blood and Marrow Transplant & Cellular Therapy
  27. Damian Collier, Friend
  28. Damian Finnegan, Consultant Haematologist and Lead for Donor Stem Cell Transplantation at Belfast City Hospital
  29. Dr Daniel McCloskey, Trustee of Team Margot Foundation
  30. Dawn Butler MP, Member of Parliament for Brent Central
  31. Sir Ed Davey MP, Member of Parliament for Kingston and Surbiton & Leader of the Liberal Democrats
  32. Edwina Dunn, Founder & CEO of The Female Lead
  33. Elaine Bell, Mother of a stem cell donor
  34. Emma Chichester Clark, Friend
  35. Emma Stapley, Donor
  36. Miss Feyona Daley, Patient
  37. Fiona Hazell, Chief Executive, Leukaemia UK
  1. Fiona Loud, Kidney Recipient & Policy Director, Kidney Care UK
  2. Dr Frances Dowen, Consultant Nephrologist
  3. Frank Fletcher CEO, Ellen MacArthur Cancer Trust
  4. Ger Graus, Patient Family’s friend
  5. Gurch Randhawa PhD FFPH DL, Director of the UK Organ Donation & Transplant Research Center at the University of Bedfordshire
  6. Heidi Hampshire, Donor
  7. Helen Gravestock, Director of Policy, Communications and Voice, Young Lives vs Cancer
  8. Hilary Lindsay, Chair, CLL Support
  9. Jacob Knox-Hooke, Trustee, Race Against Blood Cancer
  10. Jade Johnson OLY
  11. Dr Jill Shepherd, Senior Lecturer in Stem Cell Biology, University of Kent; Member, UK Stem Cell Bank Steering Committee
  12. Jay Blades MBE, Eco Designer & Award-Winning TV Presenter
  13. Joel Cadbury, Chairman, Longshot Ltd
  14. John James OBE, Chief Executive, Sickle Cell Society
  15. John McDonnell MP, Member of Parliament for Hayes and Harlington
  16. Jonathan Smith, Co-Founder Skylark Works, Charity Supporter
  17. Judi Rhys MBE, Chief Executive Officer, Tenovus Cancer Care
  18. Judy Leden MBE, Stem Cell Donor
  19. Kailayapillai Ranjan, Donor
  20. Katy Brown, Donor
  21. Kay and Keith Sudbury, The Adrian Sudbury Schools’ Education Trust (ASSET)
  22. Keith Dugmore MBE, retired Director of Demographic Decisions Ltd
  23. Keith Knowles OBE CBll, CEO, Beds & Bars Ltd
  24. Kirit Mistry, Founder and lead for health inequalities, South Asian Health Action.
  25. Kirit Modi MBE, Honorary President of NBTA & Chair of JHOD
  26. Krishani Ranjan, Donor
  27. Lisa Silas, Advanced Nurse Practitioner and Co-Chair London Kidney Network Transplant Collaborative
  28. Lowri Griffiths, Chair, Wales Cancer Alliance
  29. Dr Lucy McKay, CEO, Medics4RareDiseases
  30. Luke Bugdol, Stem Cell Donor
  31. Dr Luke Yates, Life Live Give Life
  32. Lynette Dowe, Grandmother of a bone marrow recipient
  33. Professor Mahendra G Patel OBE, Director for the Centre for Research Equity University of Oxford
  34. Manhar Mehta, Chairman, Vanik Council UK & Coordinator for organ donation in the Jain and Hindu Communities
  35. Dr Mark Bale, Genomics & Bioethics Advisor and Chair of Ethnicity Transplantation and Transfusion APPG Steering Group
  36. Mark Tami MP, Member of Parliament for Alyn and Deeside
  37. Martin Beaumont
  38. Mary Glindon MP, Member of Parliament for North Tynside
  1. Melanie Ireland, Patient Family
  2. Michael Dynan, The Assembly Events
  3. Nadia Martini, Patient Family
  4. Neil Robertson
  5. NHS Race and Health Observatory
  6. Nishtha Chugh, Churchill Fellow, 2016
  7. Orin Lewis OBE, Chief Executive of ACLT (African Caribbean Leukaemia Trust) & Chair of NBTA (National Black, Asian, Mixed Race and Minority Ethnic Transplant Alliance)
  8. Dr Paul Harden, Chairman, Transplant Sport
  9. Paul Veys, Professor of Allogenic Cell Therapy UCL & Previously Director Blood andMarrow Transplantation Great Ormond Street Hospital for Children (1994-2021)
  10. Professor Persis Amrolia, Professor of Transplantation Immunology; Infection, Immunity & Inflammation Dept. UCL GOS Institute of Child Health
  11. Peter McCleave, 10,000 Donors
  12. Philippa Esson, Nurse
  13. Pip Wilson, Donor
  14. R. Cameron Crockett, Donor
  15. Rachel Hopkins MP, Member of Parliament for Luton South
  16. Rajesh Sivaprakasam, Consultant in Transplant, Access and General Surgery, Lead for Robotic renal failure Surgery, Research and Education, Chair for Barts health Robotic research programme
  17. Robert James, Friend
  18. Robin Norris, Chairman, Keystone Group of Companies
  19. Ros Mafi, Stem Cell Donor
  20. Roydon Turner, Director and Producer, Awesonova / Orgamites
  21. Dr Saeed Ahmed, Consultant Interventional Nephrologist and General Medicine Physician
  22. Sally Bee, Heart patient and donor campaigner
  23. Salmaan Dalvi PhD, Global Regenerative Medicine Society
  24. Sandra Currie, Chief Executive, Kidney Research UK
  25. Sarujan Ranjan, Donor
  26. Sheeraz Naqvi, Asian and Middle Eastern Blood Cancer Trust
  27. Dr Stefano Casalotti, Patient Family
  28. Stephan Schumacher, DKMS UK
  29. Stephen Glancey
  30. Dr Supanya Lamsam, Patient Family
  31. Tal Arrowsmith
  32. Terry Archbold, Beatrix’s Heart Journey / Hero Inside
  33. Tim Smith, Donor
  34. Sir Trevor Phillips, Sickle cell Carrier; Chair, Webber Phillips & former chair, Equalities and Human Rights Commission
  35. Uthishtan Ranjan, Donor
  36. Virendra Sharma MP, Member of Parliament for Ealing, Southall
  37. Vivian Osho, Sickle Cell Advocate
  38. Yaser Martini BEM, Patient family

Posted in: Journal
March 8, 2024

It really does help if you write to your local MP – here’s how…

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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

Posted in: Journal
February 10, 2024

All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion AGM: Wednesday 7 February 2024

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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

Posted in: Journal
January 9, 2024

Calling for contributions from anyone involved in engaging people from minority ethnic backgrounds in stem cell / blood / tissue donation and /or biobanking

By

with Dr Jill Shepherd

Dr Jill Shepherd, at the University of Kent was one of the more than 100 people who attended the APPG inquiry report launch last month.

Jill is a Senior Lecturer in Stem Cell Biology in the School of Biosciences and her project team is leading a discussion panel  entitled ‘Public Participation and Health Equality in Future Biobanking’ as part of the 2024 quadrennial joint meeting of the European Association for the Study of Science and Technology (EASST) and the Society for Social Studies of Science (4S) 16-19 July in Amsterdam.

Jill has asked for our help with engaging people from minority ethnic backgrounds in stem cell / blood / tissue donation and /or biobanking.

To this end, she has written what follows below, which I trust clarifies the “call” (request for information) a bit for the wider community.

Thank you for supporting in any way you’re able.

Team Margot
Together, saving lives

By Dr Jill Shepherd

Professor Joy Zhang

Whilst we traditionally think of ‘biobanking’ as storage of donated tissue / cells for patient treatment,  we can also think of a donor registry as a kind of biobank. The panel would be enriched by participation from a wide range of stakeholders involved in the creation, management and use of all such biobanks. We invite conventional paper presentations, visual exhibitions or photography displays, as well as brief demonstrations of alternative creative methods that foster broader public engagement in advancing biobanks as a catalyst for health equity. Link to more information and abstract submission portal in the call below. Any questions or queries please contact Dr Jill Shepherd (j.l.shepherd@kent.ac.uk). 

Call: EASST/4S-Panel 157:  Public Participation and Health Equality in Future Biobanking
(This panel is part of the 2024 quadrennial joint meeting of the European Association for the Study of Science and Technology (EASST) and the Society for Social Studies of Science (4S), 16-19 July in Amsterdam.)

Camille-Serisier

Persistent difficulty engaging minorities in biobanking necessitates methodological innovations and a recalibration of priorities. This is essential to evoke trusting and reciprocal partnership between minority/marginalised communities and health establishments to curate a biodatase that is inclusive and equitable for future collective health.

Co-convened by sociologist, Professor Joy Zhang also from the University of Kent and Founding Director of the Centre for Global Science & Epistemic Justice. Joy is a sociologist with a first degree in medicine. She is a leading expert in the transnational governance of scientific uncertainty and the democratisation of knowledge production. Also on the panel is a natural scientist and artist, Camille Serisier who explores the power of storytelling as a force for positive social change. This combined format panel welcomes research papers, visual exhibits, and creative demonstrations for broader public involvement in advancing biobanks as a catalyst for health equity.
Details and abstract submission portal: https://nomadit.co.uk/conference/easst-4s2024/p/14203 
Deadline: 12 February 2024
Posted in: Journal
December 11, 2023

Over 100 people join the APPG Inquiry report launch

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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

Posted in: Journal
December 4, 2023

APPG REPORT SAYS LIVES ARE BEING LOST BECAUSE OF LACK OF MIXED HERITAGE AND ETHNIC MINORITY DONORS

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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).

Posted in: Journal
October 7, 2023

Team Margot Donor Registration Day 2023

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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

TM - Picaddily Margot

Posted in: Journal
October 6, 2023

Margot’s father speaks at Buckinghamshire New University at the start of Black History Month

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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

Posted in: Journal
September 30, 2023

Introducing… Orgtober

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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

 

Posted in: Journal
September 23, 2023

Organ Donation Week 2023

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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

 

_______

Posted in: Journal
September 23, 2023

Grant Giving by Team Margot Foundation

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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.

cubby hole£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):

  1. keystoneGreat Ormond Street Hospital
  2. Royal Manchester Children’s Hospital
  3. Bristol Royal Hospital for Children
  4. Birmingham Children’s Hospital
  5. Kingston Hospital
  6. St Georges Hospital
  7. East Surrey Hosptial
  8. St Peter’s Hospital
  9. Epsom Hospital
  10. Royal Marsden East Surrey
  11. Royal Surrey Hospital

2015

Screenshot 2019-06-06 at 10.16.32

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

Screenshot 2019-06-06 at 10.15.20

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

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

with Dr Owen Williams (L) and Margot's consultant Dr Phil Ancliff at our Parliamentary Reception

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.distracted

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

Screenshot 2019-06-06 at 11.01.23A 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

DonnaThe 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.

click here to donate

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 ?

 

Posted in: Journal
August 13, 2023

Happy birthday, Margot

By

Were she still with us, Margot would have been celebrating her 11th birthday today.

To mark the occasion of her 10th birthday, last year I tried to compile a list of 10 videos to share, however there was so much material that I didn’t want to omit, the best I could do was to create a shortlist of 21 videos, which I’m sharing again today.

Please feel free to watch & share.

Happy birthday Margot.

We miss you x

  1. Happy birthday Margot https://youtu.be/jT8srICmShU
  2. Light The Way https://youtu.be/yq8B6KM5Odc
  3. Arabella Greve on World Book Day https://youtu.be/2R42yYhw2mo
  4. Beds and Bars AGM 2019 https://youtu.be/JJEJGEWGJHw
  5. Great Ormond Street hospital employees & CLIC Sargent team video https://youtu.be/4LluzPdCiDM
  6. ‘Giving to help others’ Assembly video https://youtu.be/mhuZRzfJnKQ
  7. Finding the Perfect Match (documentary by Stephanie Gabbatt) https://youtu.be/sDHOv82xRNw
  8. City Hall 2017: The Power of One https://youtu.be/b7ZnzEU79XA
  9. Crouch End For Margot https://youtu.be/F0Atm-jfRNg
  10. Primary school presentation by Margot’s auntie Nadia https://youtu.be/ttkinnKOnFw
  11. “I love you” https://youtube.com/shorts/zd81fjtyqx4?feature=share
  12. Blood donation video (‘Giving to help others’) Team Margot Blood Donation film
  13. Celtic Challenge: The final push https://youtu.be/HsSfBLPI1IQ
  14. Interview on ITV Central https://youtu.be/98RI5NnQzsM
  15. Team Margot Medical Courier at KidZania London https://youtu.be/3s3YbyT89oQ
  16. Katrina’s journey as a bone marrow donor https://youtu.be/QzNxVhCo8do
  17. Mayor’s question time https://youtu.be/dxw4zoWycuY
  18. Margot’s father speaks  at blood recognition awards ceremony https://youtu.be/cjuwQ_Ps9Ns
  19. Parkdean Resorts supports Team Margot https://youtu.be/yBmIMXtA00s
  20. Happy birthday Margot from Harley Bird https://youtu.be/asm6k7b7il8
  21. Harley Bird appeal “Goodnight Margot, sleep tight” https://youtu.be/LqqpD9iVc4E

Posted in: Journal
June 14, 2023

World Blood Donor Day 2023

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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

Posted in: Journal
April 13, 2023

NHSBT Blood Donor recognition ceremony

By

Andre, who has the Ro blood subtype

I was honoured to be invited to speak at another NHSBT blood donor recognition ceremony today, attended by 160 people at The Stoop, Harlequins Rugby ground.

The event was to celebrate donors who have either achieved 100 red cell donations or 250 platelet donations🙌😲

Interestingly, Andre pictured with me has a very rare subtype of blood which is needed to treat Sickle Cell patients: the Ro subtype of blood.

I met many super super donors (wonderful people) and shared the stage with Ginny Walker who told of her urgent need for blood after losing 60% of her blood during childbirth !

Such an uplifting day and one which I was delighted Rufus (now 14) attended with me.

Thank you to all blood, platelet and plasma donors !

Team Margot
Together, saving lives

 

Posted in: Journal
March 27, 2023

All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion Announce Parliamentary Inquiry into Diversity, Donation and Delivery

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27th March 2023

The recently formed All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion (ETT) announced the launch of Parliamentary Inquiry into the access to donors for those from diverse ethnic backgrounds.

The Inquiry was announced at the Groups inaugural launch in Parliament today to an audience in excess of 120 guests including donors, patients, donor and patient families, clinicians, charities, national donor registers, NHS Blood and Transplant (NHSBT), Department for Health and Social Services (DHSC), MPs and Peers.

Attendees were welcomed by award-winning TV presenter Jay Blades MBE and the Chair of the Group, Sarah Olney, Liberal Democrat MP for Richmond Park, introduced the speakers:

● Jabeer Butt OBE, Chief Executive, Race Equality Foundation
● Professor Gurch Randhawa PhD FFPH DL, Professor of Diversity in Public Health and Director, Institute for Health Research
● Jay Patel, the father of Aari Patel who donated 7 organs and saved the lives of 2 other children, after he tragically passed away at the age of three

Announcing the Inquiry, Sarah Olney said “We live in an increasingly diverse world. Whilst 18% of the UK population is from an ethnic minority, this becomes 34.5% for pupils in primary and secondary schools. The NHS is not prepared for this diversity. Our NHS is focused on meeting the health and care needs of all people, however when it comes to transplant and transfusion, stark healthcare inequalities exist for mixed and minority ethnic patients. Because nothing can happen without a donor.

Our Group’s inquiry will explore why it’s so much harder for patients from diverse backgrounds to find suitable donors and make concrete policy proposals to ensure that everyone has a fair chance to find a donor irrespective of their ethnicity.”

Yaser Martini, from the charity Team Margot Foundation, said “Today’s event and the coming together of so many of those involved with and responsible for blood, organ, stem cell and bone marrow transplant and transfusion across the UK, illustrates the desire within this community to deliver a future where every patient, regardless of their ethnicity or heritage, is able to receive the same opportunity to benefit from a suitably matched transplant or transfusion.”

Click here or on the above image to download the booklet presented at this inaugural stakeholder meeting

For more photographs from this event, click here.

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

The All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion Executive members are:
Honorary President – The Baroness Benjamin DBE OBE
Co-Chair – Sarah Olney MP (LibDem)
Vice Chair – Bambos Charalambous MP (Lab)
Vice Chair – Mark Tami MP (Lab)
Officers:
Feryal Clark MP (Lab)
Fleur Anderson MP (Lab)
Lord Evans of Rainow (Con)
Marsha De Cordova MP (Lab)
Sir Peter Bottomley MP (Con)

Posted in: Journal
December 6, 2022

Team Margot is Secretariat for the All-Party Parliamentary Group: Ethnicity Transplantation and Transfusion

By

Team Margot Foundation had a bit of a landmark day on Tuesday 6 December when a new All-Party Parliamentary Group held its inaugural meeting.

The charity conceived of this idea (thanks to one of our team, Alan Miller pictured above, far right) and in the ensuing months set about making it a reality.

Team Margot Foundation is the Secretariat for this new All-Party Parliamentary Group : Ethnicity Transplantation and Transfusion and huge thanks must go to Paul Hegarty (pictured above, far left), a very experienced Honorary Secretary for the Beer Group for volunteering to be Honorary Secretary for our APPG, on a pro bono basis.

We are enormously grateful too to the MPs, Baroness and Lord who have supported the new Group and who are listed below. Special recognition and thanks must go to the Group Chair Sarah Olney MP and Megan Harding from her office, without whom the journey to holding an inaugural meeting might not have occurred so soon.

Our manifesto is below for your attention and it is followed by the official press release and some photographs.

As ever, thank you for your support.

Team Margot
Together, saving lives

 


L to R: Yaser Martini, Orin Lewis, Sir Peter Bottomley MP (Officer), Nadia Martini

Megan Harding, Sarah Olney MP (Chair) and Fleur Anderson MP (Officer)

A new All-Party Parliamentary Group for Ethnicity Transplantation and Transfusion (ETT) held its inaugural meeting in Parliament today.

Chair, Sarah Olney, MP for Richmond Park, said “The sad reality is that it is far harder to find a match for organ donation if you are from an ethnic or mixed-race background. The latest census data shows that 18% of the UK population is from an ethnic minority. It is vital that transplantation and transfusion services engage with ethnicities from all backgrounds if the NHS is going to serve our increasingly diverse population.”

Orin Lewis OBE, Chair of the National BAME Transplant Alliance and co-Founder of ACLT said “We are raising awareness of how the lack of donor participation affects patients with ethnically diverse backgrounds. Mixed and minority ethnic patients requiring an organ, stem cell or bone marrow transplant or a blood transfusion face enormous health inequalities. It is vital that there is equal access to transplants and transfusions for mixed and minority ethnic patients.”

“The new All-Party Group will advocate changes to encourage more donors to come forward from ethnically diverse communities to donate blood, organs, stem cells and bone marrow. This will help save and improve the lives of patients from all backgrounds across the UK.”

L to R: Orin Lewis, Mark Tami MP (Officer), Paul Hegarty (Honorary Secretary), Nadia Martini, Yaser Martini, Tim Hammersley, Alan Miller

Team Margot co-founder, Yaser Martini BEM, said “I discovered the vital importance of donors when my own daughter, Margot, was diagnosed with Leukaemia at just 14 months of age. Whilst a donor was found for Margot and she had a transplant, the registers of unrelated donors are not sufficiently diverse and Margot’s mixed heritage was the main obstacle to finding her ‘perfect match’.”

“This new Parliamentary Group will work to ensure that we develop the right policies in the UK to ensure everyone is able to access the right treatment, whatever their ethnicity. To ensure that no more families have to face the tragedy of losing a loved one for the lack of a life-saving donor match.

6th December 2022

For more information contact Yaser Martini
yaser@teammargot.com or +44 7770 672 559

 

AboutTeam Margot Foundation (charity no: 1160236) will provide secretariat support to the new 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. Further information can be found on the Team Margot website

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 – Bambos Charalambous MP (Lab); Vice Chair – Mark Tami MP (Lab); Officers: Feryal Clark MP (Lab), Fleur Anderson MP (Lab), Marsha De Cordova MP (Lab), Sir Peter Bottomley MP (Con).

Posted in: Journal
October 26, 2022

Margot’s father Yaser speaks at Cancer52’s Annual All Stakeholder Event

By

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

 

 

Posted in: Journal
October 25, 2022

Parliamentary Reception – Celebrating Blood Donation & Black History Month

By

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

Posted in: Journal
October 7, 2022

Today, we are publicly sharing Margot’s private blog, for the first time

By

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)

Posted in: Journal
June 6, 2022

Yaser Martini awarded a British Empire Medal in the Queen’s Birthday Honours

I am extremely proud to announce that my brother, Margot’s father, Yaser has been awarded a British Empire Medal in the Queen’s Birthday Honours 2022 for services to Stem Cell Donation.

Family & friends came together as ‘Team Margot’ in late 2013 when Yaser and Vicki’s daughter, Margot, was diagnosed with a rare form of Leukaemia. Margot’s best chance of survival was to find a matching stem cell donor and Team Margot ran an appeal to find Margot and other patients like her a ‘perfect’ donor match.

Yaser & Vicki led the charge working closely with me and Margot’s auntie Charlotte. Eventually, a ‘suitable’ match was found and bone marrow was donated by a 21 year old man in Germany, so enabling Margot to have her bone marrow transplant in February 2014. Unfortunately, Margot’s blood cancer was extremely aggressive and she relapsed and died aged 2 years 2 months old on the 27 October 2014.

Yaser co-founded the charity, Team Margot Foundation in January 2015 and has campaigned relentlessly over the years to educate, inspire and motivate people, especially those of mixed heritage, how they can literally help save the lives of others by registering as a stem cell or bone marrow donor. Yaser is a regular speaker at the NHS Blood and Transplant donor recognition ceremonies and is an active workshop contributor to the World Marrow Donor Association. All our family and friends feel hugely proud of Yaser and believe that this award is greatly deserved and I suspect that everyone at Team Margot will feel the same way too.

Whilst such an award is an honour, it reminds us of Margot’s absence. Margot’s inspiration and strength, love of life and her legacy is recognised with both the work of Team Margot and now with this British Empire Medal.

Thank you to everyone who continues to support Team Margot and to all those people who have registered as a donor.

Team Margot
Together, saving lives

Posted in: Journal
June 3, 2022

“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.”

By

 

“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…

Posted in: Journal
May 6, 2021

Team Margot’s Impact Report & Three Year Strategic Plan

By

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

Posted in: Journal
February 21, 2021

Margot’s legacy is your legacy too. 

By

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

Posted in: Journal
January 14, 2021

London Karate supports Team Margot

By

Rufus, aged 4

Rufus & Digby

Margot’s brother, Rufus started learning Karate at the age of four and today (12) remains a student (purple belt). Similarly, Digby (5) took up Karate last year and for a while, I did too.
 
Thank you very much to everyone at London Karate for schooling me & my boys in the “Shukokai do” style of Karate, which means “way for all”.
 
As a parent, I absolutely share your core values of self discipline, good manners and respect for others and it’s wonderful to now have the formal support of Kyo Rei Shukokai Karate – London Karate LTD.
 
Special thanks to the Chief Instructor of London Karate, Sensai Alexander Horsfall (5th Dan Black Belt) for making this happen and also for lending me your special pink belt !
 
?
 
Team Margot
Together, saving lives

with Sensai Alex

London karate has an official charity please spend some time having a look at their website and get yourself on the bone marrow register.

Posted by Alexander Horsfall on Saturday, January 2, 2021

Posted in: Journal
February 27, 2020

Parkdean Resorts adopts Team Margot Foundation as its chosen charity

By

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

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

 

TM - Picaddily Margot

Posted in: Journal
February 21, 2020

The future of Team Margot Foundation is about education

By
Margot, July 2014

Margot, July 2014

Dear Team Margot Supporter

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And as ever, thank YOU for your ongoing support.

Team Margot
Together, saving lives

Screenshot 2020-02-20 at 23.04.17

Posted in: Journal
September 9, 2019

Why your mixed heritage could be vital

By

Margot’s mixed heritage was the reason why it wasn’t possible to find her perfect matching donorWhat’s your heritage ?In 2013, my daughter Margot was diagnosed with blood cancer and she needed a bone marrow transplant to stand the best chance of survival.

But a transplant isn’t possible without a donor.

In the search for her donor match, we learned that Margot’s mixed heritage was the reason why it wasn’t possible to find her ‘perfect match’.

People with a mixed heritage are the most disadvantaged when it comes to seeking a donor with a matching tissue type. Similarly, those from the Black, Asian and minority ethnic communities are far less likely to find their match than a white Northern European patient, for instance.

The registers of stem cell and bone marrow donors are simply not large enough, nor are they sufficiently diverse. It is estimated that mixed race makes up only 3% of the registered bone marrow donors worldwide.

It’s complex; mixed race has no medical definition and because of varying perception’s of what ‘mixed heritage’ or ‘mixed race’ is, there is no common understanding. Moreover, how people choose to self identify and relate to this often determines whether they recognise the need to register as a stem cell and bone marrow donor.

Margot’s story underscores the importance of these issues; her heritage was a blend of Syrian, Armenian, Scottish, Thai, English and New Zealand, however none of this could be determined from simply looking at her.

The need for more donors of mixed heritage on the registers is only becoming greater and more necessary. Thankfully, the message is beginning to get out and today there are two campaigns running right now where mixed race patients are desperately seeking their perfect matching donors.

Please see Astrid & Peter’s stories below and SHARE.

Thank you.

Team Margot
Together, saving lives

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

 

Posted in: Journal
April 28, 2019

What’s it like to actually donate ?

By

Donors talk about their stem cell & bone marrow donation experiences

Tom

Tom

Sam Bell

Sam Bell

Tom [pictured – click here for his story] is just one of many people who signed up as a potential bone marrow donor because of Margot and went on to donate.

On average, there’s someone like Tom every week, who registered because of Margot or because of the efforts of Team Margot and who then goes on to donate peripheral blood stem cells or bone marrow.

These donations give hope and a second chance at life to patients, for whom there are no other options.

 

Tessa Roberts

Tessa Roberts

donors

(L to R): Judy Leden, peripheral stem cell donor; Nadia; me; Katrina Krishnan Doyle, bone marrow donor

We love hearing these donor stories, however the vast majority of the donations are anonymous, so we always love to herald the few where the donors are willing to share their experiences.

Listen to Katrina talk about her experiences as a bone marrow donor, which is the much less likely form of donation.

On behalf of all the patients & their families & loved ones, THANK YOU and not just to Tom and all the donors listed here but also to EVERYONE who has joined the stem cell register & who supports Team Margot !

Statistically, we are told by DKMS UK that there will be more than 500 people, over 10 years, who will now receive a potentially life saving bone marrow transplant, thanks to the work of Team Margot, which is amazing.

Rajbinder, donating her peripheral blood stem cells

Rajbinder Kullar

Screen Shot 2017-02-19 at 23.25.09

James Payne

Team Margot stem cell & bone marrow donor stories – click below to read more:

Rajbinder Kullar (peripheral stem cell donor)

James Payne (peripheral stem cell donor)

Ros Mafi (peripheral stem cell donor)

Judy Leden MBE (peripheral stem cell donor)

Katrina Krishnan Doyle (bone marrow donor)

Alexandra Casley (peripheral stem cell donor)

 

Alexandra Caseley

Alexandra Caseley

 

Ros Maafi

Ros Mafi

T H A N K   Y O U  

 

FIND OUT HOW YOU CAN SAVE A LIFE.

WHAT’S INVOLVED WITH A STEM CELL OR BONE MARROW DONATION
WHAT’S THE DIFFERENCE BETWEEN A STEM CELL TRANSPLANT AND A BONE MARROW TRANSPLANT
HOW TO REGISTER
BECOME A BLOOD DONOR
REGISTER AS AN ORGAN DONOR

TM - Picaddily Margot
Supported by Mayor of London

Posted in: Journal
August 11, 2018

The Culture and Philosophy of ‘Giving to help others’

By

IMG_3885We set up Team Margot Foundation in January 2015, in memory of my daughter, Margot and to honour her legacy. A year earlier, Margot’s patient appeal for a bone marrow donor saw over 50,000 people in the UK alone requesting swab kits online, in order that they could join the register as potential donors. Margot’s appeal was covered by the media in thirteen countries and because Team Margot had built a following, we simply continued campaigning after Margot’s transplant, for the greater good.

Margot’s mixed heritage was the key reason we were unable to find her ‘perfect match’ and we soon learned about the stark disparity between the 69% chance of a White Northern European blood cancer patient finding their 10/10 antigen match and the 21% chance of a Black, Asian or Minority Ethnic patient finding their equivalent match.

Screen Shot 2018-02-25 at 23.20.20It turns out that the odds are worse still if, like Margot, you’re mixed race.

This under-representation of Black, Asian, Mixed Race and Minority Ethnic (BAME) donors on the worldwide bone marrow / stem cell registers is also the prevalent issue when it comes to the need for more blood and organ donors too.

Our work has revealed that Margot’s story resonates with children of primary school ages and that young children are able to recall salient details remarkably well.

That’s why, in partnership with NHS Blood and Transplant, we created a tailored education programme for primary schools called ‘Giving to help others’, which starts with an assembly presentation.

We believe that tailored education and awareness for children of primary school ages (5-11) will ultimately result in two key outcomes:

  1. that the children will themselves grow up accepting donation as the norm, not the exception, such that a greater proportion of them will become registered adult donors and
  2. children will feel sufficiently empowered to influence their families and loved ones at home and elsewhere

We first trialled our assembly presentation ‘test of concept’ at the start of October 2017 and officially launched the programme and our initial findings later that month, working with the Education and Youth Team, at City Hall in London. The presentation materials, including powerpoint slides, teacher notes and short animated video are all available to use for free via givingtohelpothers.org

We recognise the need for our education and awareness programme to reach out to teachers, teaching staff and also parents and the wider school communities outside the classrooms, in addition to the children themselves.

During the course of the last few weeks, the ‘Giving to help others’ assembly presentation has been piloted in several primary schools within the London borough of Southwark. We have attended these assemblies, strictly as observers and are awaiting the analysis of the feedback forms received from 725 pupils and 22 teachers.

Thank you again to everyone involved. It’s a very fluid and iterative process, however I’m pleased to tell you that our learnings are already helping to inform next steps and how best to assess and encourage greater social impact, in order that more people sign up as potential stem cell donors, give blood and register as organ donors.

It took a loved one for me to change my own attitude and behaviour towards donation and I very much hope that others will embrace the culture and philosophy of ‘Giving to help others’, without first having to suffer their own family tragedy.

Team Margot
Together, saving lives

The Giving To Help Others assembly presentation is available to download for free via: givingtohelpothers.org

 

Posted in: Journal