February 27, 2018

Team Margot Foundation – Review of Year Three (2017/18)

By
Margot, pre-diagnosis (June 2013)

Margot, pre-diagnosis (June 2013)

Dear Team Margot Supporter

My daughter, Margot died on 27 October 2014, aged two years and two months and we registered Team Margot Foundation as a charity three months later, in her memory and to honour her legacy. Margot’s story remains as relevant today as it did when she was initially diagnosed with blood cancer and our family is hugely grateful to the tens of thousands of people in the UK and more beyond who registered as potential stem cell donors in response to Margot’s appeal and to all those who have and continue to support the cause and help spread the word.

Four years ago this week, Margot received her bone marrow transplant, thanks to an anonymous male donor from Germany. Whilst the transplant didn’t succeed, our family is nevertheless unspeakably grateful to her anonymous bone marrow donor for his gift of hope and the extra time we enjoyed with Margot.

We mark this time each year by reviewing the charity’s activities.

Team Margot Foundation is a campaigning charity, with a grant giving capability and this third annual review of activities is set out below in the following sections:


Team Margot Foundation LOGOTEAM MARGOT FOUNDATION Registered Charity Number 1160236

Team Margot Foundation was set up as a Charitable Incorporated Organisation (CIO) on 29 January 2015.

There are four trustees who meet regularly during the calendar year to govern and administer the charity. The trustees also set the strategy and agenda, which they then deliver, assisted by fantastic supporters like you.

Display box

To receive a display box of wristbands for your local waiting room, email your postal address to info@teammargot.com  No financial donation is required, please just encourage people to ‘Register, wear and share’

The charity trustees are unpaid, as are all the many other wonderful Team Margot volunteers and supporters around the world. Everyone at Team Margot strives to make a difference to the extent to which they are able – we want to help save the lives of all those people who, just like Margot and our family, never thought they’d need a bone marrow transplant.

DonnaTeam Margot Foundation has no employees and accordingly there are no salaries or expenses paid by the charity, however this year, for the first time, the charity has engaged external consultants to help deliver our strategic aims (see below: ‘Giving To Help Others’ Education Programme).

The costs incurred by the charity include the hard costs of marketing and promotion, including collateral such as envelopes, postcards, postage, wristbands, lapel pins, t-shirts and sporting kit.

We are happy to give these promotional items away to our supporters, free of charge, because we value highly the lasting positive social impact that arises from the ensuing conversations and “word of mouth”. We know that there are beneficial knock-on effects and at times, incredible as it may sound, life saving outcomes.

Fulham Prep Fun Day at Barn Elms Sports Centre in London - THANK YOU to Nicky Khan, Jolanda Sinoimeri and Margot's auntie, Noura

July 2017 – Fulham Prep Fun Day at Barn Elms Sports Centre in London – THANK YOU to Nicky Khan, Jolanda Sinoimeri and Margot’s auntie, Noura

At our local doctors surgery. Click on the photograph for a downloadable poster

At our local doctors surgery. Click on the photograph for a downloadable poster

The formal charity accounts for the calendar year 2017 will be filed in due course,

however what follows is a review of activities during the period from 29 January 2017 to 28 January 2018, which is in keeping with previous reviews of the first two years.

We have also taken into account recommendations following a peer review with Neil Robertson, Chair of Trustees at Hope for Children (see: hope-for-children.org) which was conducted as a matter of good practise. It was noted that Team Margot Foundation’s affairs were generally in good order; a few minor points were made and these have since been addressed.

THANK YOU so much for supporting the work we do and also for your various efforts and contributions. It all helps and we are hugely grateful, as are the beneficiaries of our work.

Together, we are making a difference and ultimately, saving lives.

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Team Margot works with all the UK organisations in the stem cell / bone marrow arena – we don’t mind how you choose to register, only that you do please register !


BACKGROUND

In October 2013, Margot was diagnosed with an extremely rare bi-lineage leukaemia and needed a bone marrow transplant (also known as a stem cell transplant) to stand the best chance of survival.

Team MargotFamily and friends came together as “Team Margot” to help find her a matching donor. Because of Margot’s mixed heritage, we were unable to target specific communities, so we launched a global appeal asking the public to do something amazing: register as potential stem cell donors and encourage others to do the same. We explained how such a selfless act could save a life and that it could be our daughter’s.

Team Margot’s efforts to date have resulted in over 40,000 people registering as potential stem cell donors in the UK alone. Statistically, this means that more than 500 people will now have the chance of a potentially life saving stem cell transplant.

Sky News on 14 January 2014

Screen Shot 2018-02-25 at 23.20.20During Margot’s appeal, we were careful not to confuse our public appeal for more potential bone marrow donors, with fundraising or financial donation.

In that sense, not much has changed. Our message remains clear: it’s all about registrations.

And in particular, we underscore the urgent need for more registrations from the Black, Asian, mixed race and minority ethnic communities (BAME) across all forms of donation.

At Great Ormond Street Hospital in January 2014. Photo: Rebecca Reid, Evening Standard

This includes not only stem cell / bone marrow sign ups (the primary focus of the charity) but also blood, platelets and organs. This is partly because all these types of donation were relevant to Margot, but largely because the need for more donors is greatest within the BAME communities.

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To read the 4th annual State of the Stem Cell Registry, click the image above

Margot’s mixed heritage was the primary reason it wasn’t possible to find her ‘perfect match’.

To read more about the challenges relating to our ‘generation of mixed cultures and genes’, click here.

OUR VISION

We imagine a world where every patient in need of a bone marrow transplant is confident of quickly finding a matching donor. And that every requirement for blood, platelet or organ donation can be met.

We are encouraged by the ongoing advances in medical science and we very much hope that a better cure for blood cancer will be established soon. However, for the foreseeable future, the bone marrow / stem cell transplant represents the best chance of survival for many patients with blood cancer.

Similarly, blood, platelet and organ donations are urgently required in order to keep patients clinically well and to help save lives.

A patient only needs one donor and you could be that donor. Moreover, as is often the case, you might be the only one who can save a life.

CAMPAIGN WORK

Thank you Ian Ross ! and to all at The Millar for your support. The venue ran a comedy ’improv marathon’ aiming to register 200+ new potential bone marrow donors during the session. You might be wondering whether they will do it. Well I have given up asking rhetorical questions. What's the point ? Team Margot Together, saving lives https://www.comedy.co.uk/l…/news/2768/hoopla_impro_marathon/

Thank you Ian Ross ! and to all at The Miller for your ingenious support. The venue ran a comedy ’improv marathon’ aiming to register 200+ new potential bone marrow donors during the session. Initially, I wondered whether they would do it, but I gave up asking rhetorical questions. I mean, what’s the point ?

team-Margot-sign-1024x768We have continued to hone our focus on the concept that’s core to Team Margot’s work, namely: ‘Giving To Help Others’. When we say “giving”, in this context we don’t mean giving money; instead, we mean giving, literally, a part of ourselves for the sake of others, hopefully to help save a life.

Often, people don’t know how to give in this way and sometimes, the mere thought seems frightening and uneasy. That’s why we signpost where to go on teammargot.com, explain what’s involved and encourage people to register. Of course, giving in this way is a commitment, but as my wife and Margot’s mother, Vicki says: “if you’d be prepared to accept a donation of any kind, then you should be prepared to give also.”

We’d like more people to think about that.

More donors and potential donors on the registers, mean more patient matches and ultimately, more lives being saved.

At KidZania London, during Careers Week

At KidZania London, during Careers Week

IMG_8209_10241We believe that children are our future 

The first Team Margot school presentations took place in early 2015 and quite by chance, we discovered that Margot’s story resonated with primary school aged children. Initially, we were surprised at how well these young children were able to recall the salient details and facts and how, once they were given permission and felt empowered, they could positively influence their parents to physically attend our donor registration events some days later.

IMG_8221_10241By the end of that same year it had become increasingly clear to us that educating, motivating and inspiring primary school children presented a real opportunity for positive change. Existing donor recruitment initiatives are mainly focussed on older children, sixth formers, university students and adults. No one was talking to younger children. We felt certain that we were on to something given the work we had undertaken in primary schools, but we only had anecdotal evidence and a strong ‘hunch’ that a few words now, can make a lifetime of difference.

April 2017 visit to Mayfield School to present to the 6th form

A invitation to Mayfield School to present to the 6th form last year…

mayfield follow up

Mayfield School students continue to embrace Team Margot’s message, months later

With this in mind, our trustees decided upon a more structured and deliberate approach in respect of the running of the charity, given our limited time and resources. 2016 was a transitional period, we started to reduce the time we were spending on smaller / ad hoc events and instead began spending more time on planning and executing a new strategy, geared towards primary school education, that could scale.

In early 2017, we interviewed a number of different firms and eventually engaged an eclectic mix of really fabulous complementary agencies, namely Edcoms, Koop and Munro & Forster to help us create and develop our concept. Working in partnership with NHS Blood and Transplant we created an assembly presentation, aimed specifically at primary schools where the students are predominantly from Black, Asian, Mixed Race and Minority Ethnic communities.

We were pleasantly surprised to be name checked in the Annual State of the Registry Report

The above excerpt from the Annual State of the Registry Report highlights the importance & shared goal of recruiting more BAME donors

We then ran a test of concept and documented our findings. The assembly presentation is the first module of what we call the ‘Giving to help others’ education programme.


what's the best gift ever ?‘Giving to help others’ education programme

Children are encouraged to visit givingtohelpothers.org at home, with their family & loved ones. This new website contains information and links on how to sign up as a donor, as well as teacher’s notes, video animation and assembly presentation

Children are encouraged to visit givingtohelpothers.org at home, with their family & loved ones. This new website contains information and links on how to sign up as a donor, as well as teacher’s notes, video animation and assembly presentation

The ‘Giving to help others’ education programme seeks to promote behavioural change through tailored, age appropriate content for children between 5-11 years of age.

The intention is that donation becomes more accepted as the norm, rather than the exception and also that children will talk to & encourage their families and loved ones to consider donation of all kinds.

The school assembly takes approximately 25 minutes to deliver and the online pack comprises:

Teachers Notes

PowerPoint presentation, including questions / talking points for discussion

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Head Teacher, Lorram Black leads the ‘test of concept’ assembly presentation at Dog Kennel Hill Primary School in October 2017

A 2 minute animation video

Suggested parental communications

Ian Trenholm, CEO of NHS Blood and Transplant

Ian Trenholm, CEO of NHS Blood and Transplant

• Feedback & consent forms

All the above information is available to download for free on: givingtohelpothers.org

The information is also available on the NHS Blood and Transplant Promoting Donation Hub.

On Monday 30 October 2017, we were delighted to launch our Screen-Shot-2017-11-03-at-15.43.55-1024x576education programme, jointly with NHS Blood and Transplant at City Hall in London.

Josie Todd, Project Manager for London Curriculum, Greater London Authority

Josie Todd, Project Manager for London Curriculum, Greater London Authority

On our panel of speakers were Jesse Panda (13) from Oasis Academy Waterloo who delivered spoken word, Elisha Rankin-Hart (13) from Queens Park Community School who spoke about her father’s kidney transplant and her perspective of that experience, Becs Palmer who heads up the fantastic Education and Youth team’s Peer Outreach Workers and Josie Todd, Project Manager for London Curriculum, Greater London Authority.

Screen-Shot-2017-11-03-at-15.44.30-1024x576We presented our findings, following our initial test of concept at Dog Kennel Hill Primary School, in Camberwell, London, where it was fantastic for us to see the assembly being delivered, first hand.

We were also privileged to speak to some of the pupils afterwards.

Elisha Rankin-Hart (13) from Queens Park Community School also spoke about her father having a kidney transplant

Elisha Rankin-Hart spoke about her father having a kidney transplant

It was an invaluable learning experience and overall, we were thrilled to receive very positive feedback from teachers, teaching assistants and most importantly, the pupils alike.

Screen Shot 2017-11-22 at 12.32.11As a result of this initial pilot, we made tweaks to the content & delivery of the assembly presentation pack and will be beginning a more extensive pilot programme over the course of the next few months, to further trial and monitor social impact and importantly, registrations. Our primary focus will be on the London Borough of Southwark for various good reasons, not least because over 60% of people in Southwark under 30 years of age are BAME.

Presenting in the Map Area at City Hall, London, on 30 October 2017, alongside Jesse Panda (13) from Oasis Academy Waterloo, who followed my talk with Spoken Word

Presenting in the Map Area at City Hall, London, alongside Jesse Panda

The ‘Giving to help others’ education programme is in part ‘powered by’ Team Margot, however there are many other collaborating parties besides and consequently it will be operated in a very different, more commercial way from Team Margot Foundation, which is an unpaid volunteer charity.

Our initial aim is to raise around £1 million to fund the programme development and to roll out over the next 5 years, enabling us to put formal structures and processes in place, in order to operate sustainably and scale. To find out more, please email me.

A special thank you to Tendai, for all your help and valuable guidance behind the scenes, which is hugely appreciated.

with some of the Peer Outreach Workers (clockwise): Taiwo, Alfie, Nishah, Darnell, Kelsea, Mark & Derreem

with some of the Peer Outreach Workers (clockwise): Taiwo, Alfie, Nishah, Darnell, Kelsea, Mark & Derreem

‘The Power of One’ photographic exhibition features, amongst others, three people who signed up because of Margot’s campaign & then went on to actually donate their stem cells and bone marrow (l to r): Rajbinder Kullar, Katrina Krishnan Doyle, Rosalyn Mafi pictured here with Dr Phil Ancliff, Margot’s consultant and Head of Haematology at Great Ormond Street Hospital

‘The Power of One’ photographic exhibition features, amongst others, three people who signed up because of Margot’s campaign & then went on to actually donate their stem cells and bone marrow (l to r): Rajbinder Kullar, Katrina Krishnan Doyle, Rosalyn Mafi pictured here with Dr Phil Ancliff, Margot’s consultant and Head of Haematology at Great Ormond Street Hospital

“The Power of One”

On 30 October, we also launched a photographic exhibition called “The Power of One”, again working in conjunction with the Peer Outreach Workers (POWs) from City Hall’s Education and Youth Team.

We can’t all save the whole world, but by taking a simple step each of us can make a vital difference to one person, one family, one life. Our wish was that people would take inspiration from the actions of those featured in this exhibition & take action too by registering as a potential stem cell / bone marrow donor.

The exhibition featured a series of portraits by photographer Cath Harries of the POWs, people who registered because of Margot & the work of Team Margot and then went on to actually donate their stem cells or bone marrow, sickle cell patient Chanel Taylor and Margot’s Consultant, Head of Haematology at Great Ormond Street Hospital, Dr Phil Ancliff‘The Power of One’ photographic exhibition remained on display in the best exhibition space at City Hall for 5 weeks, until the end of November 2017.

It got emotional – with Becs Palmer, who heads up the Education and Youth team’s Peer Outreach Workers

It got emotional – with Becs Palmer, who heads up the Education and Youth team’s Peer Outreach Workers

IMG_5943It’s difficult to convey the positivity, warmth and love in City Hall that day and in particular the convivial atmosphere during the evening session, which began with singing from the delightful John Ruskin School Choir, and which was peppered with numerous talks and Spoken Word from our co-hosts, including the unstoppable Rebecca Palmer and her team of POW’s, peripheral stem cell donors, sickle cell patients and closed by the fantastic London Community Gospel Choir.

And thanks to our friends at ACLT who ran a registration desk throughout, 12 people were registered on the night.

We have tried to capture some of what happened that evening in these photos and videos.

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Team Margot Foundation was nominated as 'Best Charity' in The Sun's inaugural WHO CARES WINS Health Awards ! We are proud to have collected a highly commended award in this category

Team Margot Foundation was nominated as ‘Best Charity’ in The Sun’s inaugural WHO CARES WINS Health Awards ! We are proud to have collected a highly commended award in this category

Huge CONGRATULATIONS to Vanessa & Josephine and everyone at Spread a Smile for winning 'Best Charity' at The Sun's WHO CARES WINS Health Awards. Margot benefitted from their wonderful work - seen here with one of their fairies back in January 2014 at Great Ormond Street Hospital

Huge CONGRATULATIONS to Vanessa & Josephine and everyone at Spread a Smile for winning ‘Best Charity’ at The Sun’s WHO CARES WINS Health Awards. Margot benefitted from their wonderful work – seen here with one of their fairies back in January 2014 at Great Ormond Street Hospital

As I trawl through all the information in preparation to write this annual review, I am reminded of just how much has happened this year ! It’s a massive work effort and as with previous reviews, the intention isn’t to try and cover everything that has occurred, but I very much hope that this summary will give you a flavour and that it is representative of all the superb work and activity that has taken place.

 

So, in no particular order…

World’s First Double Marathon Des Sables

April 2017 – This video makes for compelling viewing; it chronicles an extraordinary self-imposed running challenge across the desert in Morocco by Gavin Sandford, who ran 150 miles alone, before then joining and completing the Marathon Des Sables (itself another 156+ miles).

Gavin finished last year’s Marathon Des Sables in 187th place, there being more than 1,100 participants.

Gavin ran for Team Margot, as well as two other charities: BLESMA and Queen Elizabeth Hospital Birmingham, raising over £9,500 in all. Astonishing.

Morocco is one of many countries that doesn’t have a bone marrow register.

May 2017 – Margot’s auntie Nadia presented at the Nursing and Midwifery Conference 2017 at Kingston Hospital to over 200 nurses and midwives.

Run Run as Fast as You Can (Trailer) by Katie Smith

Many congratulations to filmmaker, Katie Smith & all those involved with ‘Run Run as Fast as You Can’ for WINNING Best Drama at the Los Angeles Film Awards at the BAFTA & Academy Award accredited festival, the L.A. Shorts International Film Festival !

The film is dedicated to Margot and the relevance becomes clear as the story unfolds (I am sworn to secrecy !) and unfortunately, the film cannot be shared until the awards ‘season’ is over. The more credit and recognition the film receives, the greater the awareness of the need for more bone marrow donors.

And thank you Katie !

Chris Gotke

Lt Cdr Chris Götke, a highly decorated Naval pilot who has been awarded the Air Force Cross

IMG_4164-e1499582167315-768x576Yeovilton International Air Day

Margot’s brother, Rufus, my friend James and I travelled down to the Royal Naval Air Station at Yeovilton in Somerset in July, for their annual International Air Day.

This is a hugely popular ‘Fly Navy’ airshow which showcases the Royal Navy’s Fleet Air Arm, its current and future capabilities and historic accomplishments, including hours of amazing flying displays and spectacular role demonstrations.

Yeovilton Air Day with RufusIt also features an enormous array of ground attractions, from engineering fairs to the latest defence technology exhibitions, Service displays, trade stalls and arena displays.

For the thrill seekers, there are simulators, fairground rides and helicopter pleasure flights to enjoy, making this a regular ‘family day out’ calendar fixture for 40,000 visitors each year.

We met many people, including existing or previous blood donors who weren’t aware of the need for bone marrow, a lady who had a bone marrow transplant three years ago, people from the police & the military, nurses, girl guides and basically the full spectrum of people and families.

Thank you to Christine Clancey and in particular Commander Henry Mereweather for the idea and for making us so welcome.

Screen Shot 2017-02-05 at 15.21.48

click here or on either of the images above to see the NHS Blood and Transplant page relating to this joint campaign

GT2Golden Ticket Campaign

This campaign initially launched in June 2016 and was extremely effective, beating predicted monthly targets each month and reaching the annual target after only 6 months.

We are delighted that the Golden Ticket campaign has recently been re-instigated again in early 2018.

Golden Tickets are emailed, printed and posted directly to existing blood donors from the target ethnic groups in demand, shortly before their blood appointments, encouraging them to join the bone marrow register by donating an extra 5ml sample of blood at the end of their forthcoming blood donation session.

Team Margot Rowers & The Celtic Challenge 2017

rowers 5

At the airport, before the flight out to Ireland…

Tom & Derek on the rib, alongside BOD – what’s not immediately apparent from the photo is the fact that both are different heights and are constantly moving up & down, significantly out of synch, making transfers on and off the two craft very tricky

Tom & Derek on the rib, alongside BOD – what’s not immediately apparent from the photo is the fact that both are different heights and are constantly moving up & down, significantly out of synch, making transfers on and off the two craft very tricky

In late April 2017 we set off for our second attempt at The Celtic Challenge, the World’s Longest true rowing race where teams race from Arklow in County Wicklow, Ireland to Aberystwyth on the Welsh coast, a distance of about 90 nautical miles.

Our initial attempt at entering the race a year earlier was cancelled, owing to bad weather.

Celtic and Pembrokeshire longboats take part in the race (and occasionally other similar boats also join in) – each boat is about 24 feet (8m) long and has 4 fixed seats and one cox.

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This screenshot was taken at 5:30am, about half an hour after we stopped rowing – we were one of the lead boats for much of the race

Each team doing the Celtic Challenge consists of 12 people who take it in turns to row, spending the time in between on a support boat. An inflatable rib is generally used to transfer people between the support boat and the rowing boat. How often teams swap rowers and how people are utilised is all part of the tactics of the race.

Team Margot won the President's Cup for the second time in a row, meaning that we raised more money for charity than any other team (almost £45,000 in total over the two years we have been involved). Astonishing.

Team Margot won the President’s Cup for the second time in a row, meaning that we raised more money for charity than any other team (almost £45,000 in total over the two years we have been involved). Astonishing.

The race is an extreme test of endurance and generally takes between 15 and 24 hours, depending on the weather. The race usually starts in the afternoon with all teams rowing throughout the night and sometimes arriving in Aberystwyth very early in the morning !

In the event, for various good safety reasons, we had to retire our boat at 5am having rowed more than two thirds of the way across the Irish Sea, 16 hours after the start. We had been making excellent progress until that time and were one of the lead boats.

Of the 13 boats that started the Celtic Challenge, only 4 rowed past the finish line. I confess that I personally found it quite helpful to hear Melvin, an eleven-time veteran of the Celtic Challenge declare: “this was the roughest of them all”.

Special thanks again to our skipper, Martin Beaumont and to the entire team for sticking with it. There are rumblings about repeating The Celtic Challenge in 2019 ! For read more about Team Margot Rowers at the Celtic Challenge 2017, click here.

This video is by Neil Griffiths, one of the Team Margot Rowers who has a blood cancer story of his own – to read more, click here. Neil raised over £8,000 for DKMS UK (we may need to rename the President’s Cup in his honour) – enjoy !

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The most welcoming sight that greeted us on arrival in Aberystwyth harbour

franca

Franca Knowles MBE

live_your_life.jpgLive Your Life 2017

A week before Margot died, I wrote in a blog post that in spite of being really very unwell “it’s abundantly clear that Margot loves life and she wants to live!”

Less than three weeks later, my friend, Franca died on 7 November 2014. Franca was a remarkable person who had a real zest for life, coining the phrase “Live Your Life” which became a creed for the company she helped grow, Beds and Bars. In her memory, her husband, Keith declared Franca’s birthday “Live Your Life Day”, a day when company employees could take the day off to celebrate life with their families or in support of a charity.

The LiveYourLife17 winning photo

The LiveYourLife17 competition winning photo

Ever since, Live Your Life Day has been held in support of Team Margot Foundation and increasingly the day is becoming marked by other companies in the hospitality sector. Last year, Franca’s birthday fell over a weekend.

A Glendola employee - many pub & bar companies support Live Your Life Day

A Glendola employee – thank you to all the hospitality companies support that support Live Your Life Day

As part of the ‘LiveYourLife17’ activities that took place at the end of July, many pubs took part in promoting a photo competition, with an exciting prize, sponsored by Beds and Bars: an all inclusive trip to Amsterdam or Barcelona  for the best photo shared with us over the weekend.

All entrants to the competition received an email explaining how they might also save a life, by joining the bone marrow register.

(L) Franca's husband, Keith with Team Margot Foundation Trustee, James Cuthbertson

(L) Franca’s husband, Keith with Team Margot Foundation Trustee, James Cuthbertson

Europe’s Famous Hostels

One of many hugely positive knock on effects following the fantastic support we receive from Beds and Bars and their St Christophers Inns chain of hostels, has been the link up with Europe’s Famous Hostels.


Europe’s Famous Hostels
 (EFH) is an association of individually owned, logo-fhindependent hostels. EFH only accept the best hostels in Europe. The association was founded in 1995 when it was made up of just 5 members. As of 2016 they have grown to include 50 Hostels, both in Europe and beyond.

Europe’s Famous Hostels’ purpose is to provide a recognisable stamp of quality in the Hostelling business. The EFH name comes as a guarantee that their customers will have a great stay at the best value; choosing a Europe’s Famous Hostel is choosing quality and great customer service.

THANK YOU Copenhagen Downtown Hostel (and all the other EFH members) for your support !

Team Margot wristbands are available at all EFH member hostels, as seen here in Copenhagen Downtown Hostel – Visitors are encouraged to ‘Register, wear & share’ – THANK YOU ALL for your support !

Richard Pryor, Mark Sexton & Sam Phillips

Sam Phillips, Mark Sexton & Richard Pryor of Casual Dining Group

Thank you Murray (MD at Beds and Bars) and also to Rui & Raquel at Europe’s Famous Hostels and of course all their members, who give us an awareness platform via posters, postcards and wristbands in all their member sites, which are seen by many thousands of travellers every day who are encouraged to: ‘Register, wear & share’ Team Margot wristbands.

If you live outside the UK, please check to see if you’re able to register as a potential stem cell donor in your home country – click here to find out more.

Casual Dining Group

Yet more support from the hospitality sector: Richard Pryor, Mark Sexton & Sam Phillips finally trudged through the doors of Bella Italia Oxford on a November Saturday afternoon after just over 50 hours non-stop walking from central London. That’s more than 127 miles (or roughly ¼ million steps). Two days and two nights on the go, with no sleep, all in support of Team Margot.

Richard posting his swabs & registration form to join the stem cell register along the way

Richard posting his swabs & registration form to join the stem cell register along the way

The trio received incredible support from their company, Casual Dining Group and received fantastic sponsorship from friends, family, and work colleagues, to the extent that they managed to raise over £10,000 for Team Margot Foundation, a sum that was then matched by their company.

Well done again gentlemen on completing a gruelling challenge and on behalf of all at Team Margot, thank you again for raising and to everyone who donated such a fantastic amount of money, especially to Steve Richards for your ongoing support.

Kenu and Ashi with their mum, Anusha and dad, Suneth

Kenu and Ashi with their mum, Anusha and dad, Suneth

An appeal to British Sri Lankans

I received a phone call in August 2017 from a concerned father, who’s son was being treated for his blood cancer at Great Ormond Street Hospital & who now needs a bone marrow transplant, in order to stand the best chance of beating his leukaemia. The phone call came out of the blue and it brought back to me the dreadful feeling of anguish and also the despair that consumed our family when Margot was in desperate need of a bone marrow donor.

Back to school: Kenu with his sister, Ashi

Back to school: Kenu with his sister, Ashi

Suneth’s son, Kenu (11) was diagnosed with AML (Acute Myeloid Leukaemia) in 2014 and had been in remission for two years. However, he relapsed during the summer. And unusually, this time it’s the ALL (Acute Lymphoblastic Leukaemia) clone which is present, making Kenu’s an extremely rare case.

Margot was gutted that she couldn’t go to school with her brothers at the start of term and all attempts at colour co-ordination failed to impress her…

Margot was gutted that she couldn’t go to school with her brothers at the start of term and all attempts at colour co-ordination failed to impress her…

Margot’s heritage was rather mixed, which meant that it wasn’t possible for us to target specific communities with our public appeal, however Kenu’s genealogy is Sri Lankan – so on that basis, working with DKMS, we sought to reach out and connect with the c.200,000 British Sri Lankan’s that could potentially make a life saving difference via a series of donor registration events in temples and community venues.

Suneth contacted me again in early January to let us know that Kenu was now back home following his bone marrow transplant, acknowledging that it’s still early days and there’s a long way to recovery, but the family is happy, considering the alternative.

with students Daniella Bernard & Grace Hynds at Picadilly Circus in 2016

with students Daniella Bernard & Grace Hynds at Piccadilly Circus in 2016

Thank you in particular to Ranjan for all that you did & for going the extra mile. Repeatedly.

‘Light The Way’ – Behind the Scenes Documentary – released to mark the Team Margot Stem Cell and Bone Marrow Registration Day on 7 October

Margot was diagnosed with blood cancer on 7 October 2013 and we mark this date each year as the Team Margot Stem Cell and Bone Marrow Registration Day. Essentially, we seek to encourage people to sign up as potential stem cell and bone marrow donors, not just in the UK but also internationally too.

Music has the ability to engage and motivate large numbers of people, so in 2016, working with students & tutors at Elstree University Technical College (EUTC) we released a song and music video, called ‘Light the Way‘, which was written and performed by the students, inspired by Margot.

This year by way of follow up, EUTC decided to produce a short ‘behind the scenes’ documentary for ‘Light the Way’ which showcases their work under the guidance of the masterful, Tegan Adams and we are delighted to share this with you.

In conversation with Nigel Farage 7:04pm 5.10.17

Click on the image above to hear Margot’s father, Yaser on LBC Radio with Nigel Farage on 5.10.17

I consider my wishes regarding the donation of my organs to be a bit like my will, and I absolutely want my wishes adhered to following my death. If you feel the same way, please ensure that your family know how you feel. Yaser, Margot's father

I consider my wishes regarding the donation of my organs to be a bit like my will, and I absolutely want my wishes adhered to following my death. If you feel the same way, please talk to your family and ensure that they know. Yaser, Margot’s father

Organ Donation Consultation

By summer 2014, Margot had already been declared “conventionally incurable”, so the palliative care team from Great Ormond Street Hospital were in regular contact with us, providing advice and guidance, helping us to manage Margot’s pain with prescription medication and to keep her comfortable and clinically well with regular blood and platelet transfusions.

The whole situation was so surreal and none of us could still quite believe what was happening.

25352012_1488140207951694_3517906057178855370_oWe had just celebrated Margot’s second birthday on 13 August; a wonderful day and because of the careful pain management, Margot had some very good moments, when it was incredulous to think that she might be so unwell.

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Click on the image above to hear Margot’s father, Yaser in conversation with Nick Ferrari on LBC Radio 5.10.17

And then, completely unannounced, Vicki came out with something totally unexpected, she raised the question of donating Margot’s organs.

It was a very difficult conversation to have, under the circumstances and because our emotions were running high. In a sense, it’s not dissimilar to the situation many families find themselves in when their loved ones are in intensive care or have very recently died and they are asked to make a decision about organ donation.

Behind the scenes, we are regular visitors to Westminster: Margot's auntie Nadia & I with shadow Health Secretary, Jon Ashworth MP and our friend, Mark Tami MP, chair of the APPG on Stem Cells

Behind the scenes, we are regular visitors to Westminster: Margot’s auntie Nadia & I with shadow Health Secretary, Jon Ashworth MP and our friend, Mark Tami MP, chair of the APPG on Stem Cells

Nevertheless, Vicki and I had the conversation & explored the options and we are now better prepared and in a better place for having done so, and that’s the important bit (to read more about our experience, click here).

Something I wasn’t aware of until recently is that organ donation is only possible under very specific circumstances: The donor needs to be in hospital, in intensive care, intubated and on a ventilator.

vicki kissing margot

Vicki with Margot, shortly before an operation at Great Ormond Street Hospital, a few weeks before Margot passed away

I understand that the reason for this is that the transplant teams need to plan the logistics of what organs are to go where – and this process takes a few hours.

Consequently, family members are called into this environment, at a critical time. And it’s in such circumstances that the topic of organ donation arises.

Hence the importance of talking to your family and loved ones. Of course, it’s far better to have the conversation about organ donation on an even pulse, when fit & well and with the luxury of time to consider the issues at hand, clearly express wishes and decisions and ideally act upon them.

An interesting take on the subject, by Michelle Clifford at Sky News

An interesting take on the subject, by Michelle Clifford at Sky News

Unfortunately, many don’t ever do this and instead their families have to contend with making a decision shortly before or after the loss of a loved one.

Team Margot Foundation welcomes the Government consultation on an organ donation opt-out system for England, which was launched in December 2017 and closes on 6 March 2018. It’s a vital opportunity for us to make systemic changes for the better, so that fewer people will die waiting for a suitable organ donor.

However, central to the success & efficiency of any system on organ donation is the need for us all to talk to our families and have “the conversation”.

Westfield Shopping Centre, White City, London

spreading the word from our stand in Westfield Shopping Centre, White City, London

25188845_1488140087951706_2834792100868665471_oWe urge people in their everyday lives, to think about this and make a decision in their own heads, regardless of the legislative framework.

And to then talk to their families and loved ones.

The consultation can be found here – whatever your views, please click this link to take part before 6 March: https://engage.dh.gov.uk/organdonation

Don’t delay !

NOW is the time to share your views on a new organ donation system.

Don’t forget those who are mixed race

mixed race

At our local doctors surgery. Click on the photograph for a downloadable poster

At our local doctors surgery. Click on the photograph above for a downloadable poster. Thank you for printing and sharing.

In September, I posted a blog: Don’t forget those who are mixed race, like you.

In particular, I wanted to make the following points: ‘mixed race’ are the fastest growing ethnic minority group (as defined according to the National Statistics classification) and – with all mixed categories counted as one sole group – are predicted to be the largest minority group by 2020 (above British Indian).

This year's most read Team Margot blog post, with almost 4,000 visits: DON'T DO WHAT I DIDN'T... Two days after our daughter, Margot died, a home pregnancy test confirmed that Vicki & I were expecting another child... click here to read further

This year’s most read Team Margot blog post, with almost 4,000 visits: “DON’T DO WHAT I DIDN’T…
Two days after our daughter, Margot died, a home pregnancy test confirmed that Vicki & I were expecting another child… Digby celebrated his second birthday a few weeks ago and later this month he will be older than Margot ever was…”
click here to read further

According to the 2011 census, Mixed-race people are the third-largest ethnic group in the UK, numbering 1.25 million, however research conducted by the BBC, suggests that the mixed race population could be twice the official estimate figure – up to 2 million or more, making it larger than the British black population.

Arguably, the actual number is an order of magnitude greater, because the mixed race population probably also includes you.

July 2017 - Margot's auntie Nadia presented to Rainbow’s (guiding for girls aged 5 to 7 years old). The girls raised £425 for Team Margot by doing odd jobs, such as taking out the rubbish and putting their clothes neatly away

July 2017 – Margot’s auntie Nadia presented to Rainbow’s (guiding for girls aged 5 to 7 years old). The girls raised £425 for Team Margot by doing odd jobs, such as taking out the rubbish and putting their clothes neatly away – Thank you & well done girls!

So what ?

Because of Margot’s experience, our family knows first hand the complexities that arise from being mixed race, when it comes to donation. And this is something that we are keen to address.

For example, Team Margot are proud members of the National BAME Transplant Alliance (NBTA), which is ‘The coordinating voice for Black, Asian and Minority Ethnic transplant donation’.

Given the absence of ‘mixed race’ from the above, it was agreed at a

recent NBTA meeting that the acronym ‘BAME’ (Black, Asian and Minority Ethnic) should be altered to hereafter be referred to as ‘Black, Asian, Mixed Race & Minority Ethnic’.

The same point was made and accepted in Westminster earlier this month, given that Eleanor Smith MP is leading a review for the Shadow Health Secretary on improving the numbers of BAME individuals registered as blood, stem cell and organ donors.

This aspect is something that was highlighted initially by Margot’s appeal and then underscored by the #match4Lara campaign.


Blood Donor Recognition Event – January 2018

Margot inspecting one of her many platelet donations

Margot inspecting one of her many platelet donations

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The Donor Recognition Event was held in Hammersmith, London

I have been giving talks at NHS Blood and Transplant Donor Recognition Events for the last three years to recognise and thank all those people who donate blood and this was the largest event I have been invited to speak at yet.

I feel very privileged to be involved with these special awards to people who have given 100 red cell or 250 platelet donations.

Only 4% of the UK population gives blood & only 2% of all blood donors get to 100+ red cell donations – so the room was filled with remarkable people !

I regard these talks as opportunities to try and at least go some way towards expressing my gratitude, and my wife Vicki’s gratitude & thanks to all the wonderful people who stepped up and provided for us, when we were in our time of need.

Jill

with Jill Sandison

And I’m sure that I also speak on behalf of all our family and loved ones and I suspect 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.

Robert (L) and

Robert (aka Bob) and Michael

So these talks are as close as we’re going to get to saying ‘thank you’.

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

I found that meeting some of the donors & having the chance to chat to them a really uplifting experience.

Robert (pictured left & calls himself Bob) started to give blood in 1970 when his then girlfriend at the time (and now wife) Beverley went to give blood. “She simply said ‘I’m going to give blood. You come as well.’ So I did.”

Margot's Grandma Annette donates red blood cells for the 60th time (October 2017)

Margot’s Grandma Annette proudly donates her red blood cells for the 60th time in October 2017. So inspirational (and probably now on donation no. 61 and counting!)

Remarkably, Bob admits that he can’t stand needles and still is uptight & nervous until after the needle is inserted.”

Margot with Grandma Annette in October 2014

Margot with Grandma Annette in October 2014

But that hasn’t stopped him: “When your partner does it, it becomes a bit competitive, a bit of a game” says Bob, whose wife was recognised for her 100th donation a couple of years ago.

Michael (right) first gave blood in 1971 after his wife, Hazel had a c-section and needed a blood donation.

Jill Sandison (pictured with me above) is a red cell donor, who saw donation as a rite of passage; “My father took me with him to his donations from when I was 8 years old. To me, being grown up meant being able to donate blood.”

With Sam Bell & his parents, Elaine & Matt. Click here to read a lovely blog post by comedian, Dom Holland (father of Tom Holland, a.k.a. Spider-Man) who writes about Sam who is a family friend. Sam signed up as a potential stem cell donor because of Margot and has since donated his peripheral stem cells to a patient in need

At the ‘Power of One’ photo exhibition with Sam Bell & his parents, Elaine & Matt. Click here to read a lovely blog post by comedian, Dom Holland (father of Tom Holland, a.k.a. Spider-Man) about Sam, who is a family friend. The whole Bell family signed up as a potential stem cell donor because of Margot. Sam was matched and later donated his peripheral stem cells to a patient in need

Jill, on a couple of occasions over the years, has been turned away and hasn’t been able to donate blood because she was anaemic at the time. “I think they still registered it as a donation, even though I was turned away, so I won’t be happy until I’ve completed my 102nd or 103rd donations!”

Fantastic.

Team Margot Foundation Trustees - supporting World Marrow Donor Day, which fell on 16 September

Team Margot Foundation Trustees – supporting World Marrow Donor Day, which fell on 16 September

Finding the ‘perfect match’

 

In early January, we thin sliced this excellent documentary by journalism student, Stephanie Gabbatt on our social media platforms, to make it more easy to watch and share, however for anyone who wishes to see the documentary in full, please see below.

The documentary features interviews with patient, Venessa, stem cell donors Ed and Joseph as well as Beverley De Gale, co-founder of The ACLT (African Caribbean Leukaemia Trust), Henny Braund, CEO of Anthony Nolan and Margot’s father, Yaser Martini from Team Margot.

Thank you very much again Stephanie for helping to shed light on the issues involved – and congratulations on achieving a 1st class honours !

FINANCIAL DONATIONS, FUNDRAISING AND USE OF FUNDS

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If you wish to fundraise for Team Margot Foundation, the charity is registered on Virgin Money Giving

click here to donate

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

As at 29 January 2018, the total fundraising and cash donations received during the last 12 months amounted to £96,317.75, which is very similar to last year’s total (£99,640.06), albeit the emphasis has shifted (see below). This outcome is all the more incredible given that the charity doesn’t actively fundraise or publicly seek financial donations.

Nevertheless, the trustees recognise that many people want to donate money and/or fundraise in support of the charity work, regardless of whether they have registered: some because they’re ineligible to register, others because they’ve been touched or inspired by Margot’s story / the efforts of Team Margot.

Team Margot Foundation gratefully accepts financial donations and funds raised by those who wish to support what we do.

Thank you Donna Hewitson for your continued support - read her blog here https://pubdonna.com/2017/03/19/where-to-start/

Thank you Donna Hewitson for your continued support – and well done on your achievements ! – read Donna’s blog here

Great River Race 2107

After all the drama at The Celtic Challenge, the 21 mile Great River Race down the Thames in September was a far more relaxed & fun affair for two Team Margot Rowers crews

To all our wonderful donors and fundraisers, THANK YOU so much again for your fabulous support.

Team Margot Foundation has two bank accounts at Charities Aid Foundation Bank (CAF Bank):

Team Margot Tough Mudder

The reason for having two bank accounts stems from the trustees wish to separate publicly raised and donated funds, which are intended to be given away as grants, from any specific donations received by Team Margot Foundation for marketing and promotional purposes.

The trustees feel this is an important distinction, which enables us to state that every penny raised or donated by the public goes to the people and projects close to our hearts.

It is the intention of the trustees to maintain this structure and to continue to operate in this way, to the extent that it is possible.

GRANT GIVING BY TEAM MARGOT FOUNDATION 

cubby holeOver the last three years, Team Margot Foundation has made a total of 119 grants: to UCL & Great Ormond Street Hospital’s Childrens Charity to further leukaemia research, to a local charity, Momentum for psychological services for patient families & also to Shooting Stars Chase, the hospice where Margot’s body rested, prior to her funeral.

Many congratulations to Wednesbury Athletic Football Club, League Champions seen here sporting their 3 kits, all of which endorse Team Margot. THANK YOU so much to the entire club: all the players, staff and supporters alike for your ongoing support and for helping to raise awareness every time you play. Special thanks also to manager, Gav Ingles (standing, far left)

Many congratulations to Wednesbury Athletic Football Club, League Champions ! seen here sporting their 3 kits, all of which endorse Team Margot. THANK YOU so much to the entire club: all the players, staff and supporters alike for your ongoing support and for helping to raise awareness every time you play. Special thanks also to manager, Gav Ingles (standing, far left)

However the vast majority of all these grants made by Team Margot Foundation have been ‘one-off’ £1,000 grants to families caring for child cancer patients.

Meeting with the Clic Sargent Care Support Workers at GOSH in September 2017 who underscored how helpful the grants were to the patient families (L to R) Rowina Ellis, Audrey Murray, Lena Copley, Barbara Inglin, Michelle Vernon

Meeting with the Clic Sargent Care Support Workers at GOSH in September 2017 who underscored how helpful the grants were to the patient families: (L to R) Rowina Ellis, Audrey Murray, Lena Copley, Barbara Inglin & Michelle Vernon

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.

These £1,000 grants are for patient families to use in any way they wish. Within the hospitals and the teams work with, they have come to be regarded as ’emergency funds’, because following completion of the verification process and the receipt of bank details, the funds are granted and typically arrive within 24 hours.

Well done to everyone who took part in Prudential Ride London & in particular Caz and Ben who did so in memory of Margot and in support of Team Margot Foundation

Well done to everyone who took part in Prudential Ride London & in particular Caz and Ben who did so in memory of Margot and in support of Team Margot Foundation – THANK YOU !

Initially, these families mainly stemmed from the haematology wards at Great Ormond Street Hospital and via Momentum, based at what was Margot’s local hospital in Kingston, however during the course of the last year, the network of hospitals expanded to include Birmingham, Bristol and Manchester Children’s hospitals as well.

distractedConsequently, during the last 12 months, all 78 grants went directly to families caring for child cancer patients – a huge increase on the 35 such grants that were made the year prior.

Inevitably, this expansion and the success of these emergency grants tested the limits of our cash resources and as a result, the trustees notified our contacts in all the hospitals that the grants

Claire Corrigan's sponsored hair cut for Team Margot

Claire Corrigan’s sponsored hair cut for Team Margot

programme had closed for the year on 13 September 2017.

with Lars, from Team Margot Denmark

with Lars, from Team Margot Denmark

In anticipation of further donations, the trustees met in January 2018 to review how best to proceed, deciding to allocate any remaining cash in the fundraising account to the hospitals where there is an existing system and process.

These grant allocations will be made in due course on a pro rata basis, based upon the number of grants made during the 2017 calendar year.

Thereafter, the grants programme will once again close and the trustees will conduct an annual review every January, to assess the ability of the charity to make additional grants.

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


Tom

Tom

Sam Bell

Sam Bell

2017/18 HIGHLIGHTS

In August, we discovered the story of a donor called Tom, who signed up as a potential bone marrow donor because of Margot…

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.

On behalf of all the patients & their families & loved ones, THANK YOU and not just to Tom, Sam and Tessa but 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

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James Payne

Other 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

For whatever reason, I have found this years review the hardest to write and again, have avoided trying to name all our fantastic volunteers and supporters because it’s simply not possible to do justice to the many wonderful people, companies, schools and communities who continue to support Team Margot.

From the bottom of my heart, T H A N K   Y O U  to all involved with Team Margot (you know who you are !) and again, a brief but special mention to those who make one-off or regular financial contributions to Team Margot Foundation.

Thank you also to our partners, NHS Blood and Transplant and also the Welsh Bone Marrow Donor RegistryAnthony Nolan and DKMS UK – these organisations enable us all to join a register as potential bone marrow donors. And whilst it needn’t cost the potential donor any money to join, this is only possible thanks to the excellent work by these government departments and charities & their amazing fundraising efforts.

I’d also like to take this opportunity to thank all the trustees of Team Margot Foundation:

Vicki with Katharina Harf, co-founder of DKMS at The Big Love Ball

Vicki with Katharina Harf, co-founder of DKMS at the DKMS Big Love Ball

Peter Harf talks about Margot's remarkable appeal and is very complimentary about our family at the DKMS Big Love Ball - we all felt touched by this gesture

Peter Harf recounts the significance of Margot’s remarkable appeal and is very complimentary about our family at the DKMS Big Love Ball – we all felt touched by this unexpected gesture

Margot’s auntie Charlotte and James for everything that you do and in particular my awesome sister and Margot’s auntie Nadia who brings so much to the table and complements me, making up for my shortcomings.

Lastly, I also wish to thank my wife, Vicki for her continued love, support and compassion and also our boys, Oscar (10) & Rufus (9) for their understanding; being in our situation is challenging and it impacts each of us in different ways. And of course, Digby (2) and our newest family member, Humphrey (3 months old at the time of writing) for the joy they bring to all our family; Margot would have loved her little brothers.

backlitWe all miss you, Margot. x

Yaser, Margot’s father

Trustee & CEO, Team Margot Foundation
Registered Charity Number: 1160236

 

 

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

Husband to Vicki and father to Oscar (2007), Rufus (2008), Digby (2015) & Margot (2012-2014)

Posted in: Journal