August 24, 2016

Team Margot at the NYSE

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with Carina Ortel, CEO of DKMS US

Christian with Carina Ortel, CEO of DKMS US

Team Margot’s Christian Drobnyk was at the ringing of the opening bell ceremony earlier today at the New York Stock Exchange (NYSE).

Thank you Christian for everything you’re doing for the cause in America and thank you DKMS US for the kind invitation, in recognition of all Christian’s help.

HAPPY 25th ANNIVERSARY DKMS !

Team Margot
Together, saving lives

Posted in: Journal
August 22, 2016

Guest Blog: Birthdays are a gift, not a right 

I’ll show my hand from the off – I have the absolute honour of being a trustee of Team Margot Foundation and I’m a friend of the Martini’s…those two things are really important in my life, really important.

If I may, I’ll tell my story.

IMG_4548When I first heard that Margot was poorly there was obviously concern, but then it turned into “Margot has Leukaemia”, that was a whole new level, and to be honest, had me asking “what is that”. As the full severity of Margot’s condition was becoming evident, my family were having our own battle. My daughter, Katie, who turned three in June, was born (in an ambulance outside the house) with some scary complications, I can remember the words now: “you have a 50% chance that she’ll live”, this turned into “you have a 50% chance that she’ll be brain damaged”. I’m pleased to report that Katie fancied those odds better than me, won through and is now a three-year-old that’s full of life and just perfect. I feel rather odd offering this at the start of a story surrounding a little girl that didn’t make her third birthday, but I think it’s important on several levels. Firstly, it’s a chance to compare and contrast fortunes and be thankful, but it’s more than that, when Sarah (my wife) and I were at our absolute lowest, there was one really consistent message of support – it was from Yaser, with words of comfort and hope; just the right words, at just the right time – those that know him will know he has a skill for that. These words came at a time when most of us didn’t know what to say to him and Vicki. Those of us with a religious calling, asked for help, those of us that don’t, maybe still asked for help, but either way we sent love. I offer you the example to show what a selfless family they are, even when they were dealing with their own struggles, they made time for others in their hearts. I confess, I may have found myself in a spiral of self-pity.

As Margot’s conditioned deteriorated, I saw a family give everything for their daughter. A campaign for stem cell donors was launched and Yaser and Vicki left no stone unturned, stretched every sinew to find a match for dear Margot. People that know Margot’s story will know that Margot found a partial match from a donor in Germany…sadly, the strength of the match wasn’t 100% and whilst it gave Margot more time with her family, it wasn’t enough to save her. Margot left us on 27th October 2014. Margot’s passing broke our hearts. I felt so angry, in what messed-up world is this right, was my main thought, that, and the feeling of total helplessness towards Yaser and Vicki. It felt that all was lost. What was the point in the campaign, those donors that came forward at the registration days, what a waste of time effort, energy, love…but no, once the dust started to settle, and the smallest bit of perspective could be taken, something very magical had happened amongst the agony…Margot had done something very special, something most of us will never dream of, Margot, through her campaign, will save hundred’s of lives and has raised hundreds of thousands of pounds for crucial research to help make Leukaemia a thing of the past.

Team Margot Foundation Trustees (L to R): James Cuthbertson, Charlotte Hathaway, Yaser Martini & Nadia Martini

Team Margot Foundation Trustees (L to R): James Cuthbertson, Charlotte Hathaway, Yaser Martini & Nadia Martini

Margot’s time with us was short, but wow that little girl made an impact. So, those of you that are still reading, I offer you two points:

1.     It could be a member of your family next. This disease doesn’t discriminate between good and bad people.

2.     If you are eligible, register your stem cells, you could save a life or give someone longer with their family – what greater gift can you offer.

Team Margot Foundation continues the work Margot inspired, work I’m privileged to be a part of. Now, please be inspired, please join the stem cell register and why not encourage someone else to. For more info on how to do that, please click here.

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Posted in: Journal
February 21, 2016

Team Margot Foundation – An overview of our first year

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Dear Team Margot Supporter

We never imagined that we would set up a charity, but that’s precisely what happened on 29 January 2015 when Team Margot Foundation was entered on the Charity Commission’s Register of Charities.

IMG_0041Background

In October 2013, when my daughter, 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, family and friends came together as Team Margot to help find her a matching donor. We appealed to the general 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.

During Margot’s appeal we were careful not to confuse our public campaign for more potential bone marrow donors, with fundraising. We wanted our message to be clear.

In that sense, not much has changed.

The only real difference is that we registered as a charity to honour Margot’s legacy as a permanent Foundation, following her untimely death on 27 October 2014, aged two years and two months.

We still don’t ask people for money, but Team Margot Foundation does now gratefully accept donations and funds raised by those who wish to support what we do.

To all our wonderful donors, THANK YOU so much for your support.

Our charity accounts are currently being finalised and will be filed shortly. This overview of Team Margot Foundation activities marks the official end of our first accounting year as a charity and is published on 21 February, the date in 2014 when Margot received her bone marrow transplant.

IMG_9573About Team Margot Foundation

Team Margot Foundation is a campaigning charity which also has a grant giving capability.

Team Margot campaigns for more people to join the worldwide bone marrow registers, especially people from ethnic minorities or those with a mixed heritage.

We seek to generate awareness of the urgent need, to educate, inform and motivate people to take positive action and join the bone marrow register, regardless of where they are in the world. We then ask them to encourage Just One More person to do the same.

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

The first of these potentially life saving transplants occurred by way of peripheral stem cell donation in late 2014 thanks to an anonymous donor who registered after hearing of Margot’s appeal. To our knowledge, there are now more than a dozen people who joined a register because they were inspired by Margot, or the efforts of Team Margot and who have gone on to actually donate peripheral stem cells or bone marrow; which means together, we’re saving lives.

Our core campaigning efforts are rooted in three initiatives, the first two are a work in progress and still at an early stage, whilst the third is up and running:

IMG_8209_1024i. an education programme – we wish to initially make children of primary school age conscious of how they can help save someone’s life by “Giving to help others”: giving blood, giving stem cells / bone marrow and ultimately, giving organs. That way, when they grow to be young adults and are themselves eligible to sign up to do these things, they will be more likely to take positive action. In the meantime, we know very well how children can influence their parents !

ii. a wish to instigate a Virtual Register for the Rest of the World – three quarters of the world’s countries don’t have a bone marrow register. We are calling on the UK Government to lead international efforts to establish a Virtual Register for the Rest of the World so that people who live in the 150 or so countries that don’t have a bone marrow register can have access to potential donors, both in their country and elsewhere in the world. This would also have the additional benefit of providing more donors with greater ethnic diversity to the 52 countries that already have a bone marrow register. Fundamentally, this initiative is about seeking to provide more matches for all.

IMG_0040iii. Team Margot Stem Cell and Bone Marrow Awareness Day

Our inaugural awareness day took place on Wednesday 7 October 2015, on the second anniversary of Margot’s blood cancer diagnosis.

The trustees were pleased with the UK coverage generated by way of two national TV interviews (Sky News and Channel 5), three radio interviews (including Radio 5 Live), an article in the Evening Standard, digital posters on the London Underground and on roadside billboards, Sky Sports channel featured a “proudly supporting Team Margot” 3 second blip before every commercial break and a raft of social media and online activity. We ended the day with an event at KidZania, London where we invited hundreds of children from Great Ormond Street Hospital and also via Momentum to join us and mark the occasion.

All the fantastic support we received was generously donated to Team Margot Foundation, such that the awareness day didn’t cost the charity a penny.

We are aiming to repeat our awareness day every year and hope to improve on our successes by bringing a more international flavour in future.

Grant Giving by Team Margot Foundation

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 recent study underscores this point 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.

As a grant giving Foundation, we have thus far made one-off grants of a thousand pounds to four families who are caring for child cancer patients. The trustees wish to expand this grant facility and are currently setting up processes at Great Ormond Street Hospital to enable us to reach many more families besides.

imageimageIn addition, we have granted £5,100 to a local charity, Momentum so that they can begin a 12 month pilot to offer psychologist-led counselling to families within their own homes as part of a new service in Momentum’s Family Support Programme. Momentum estimate that initially, four families will benefit hugely from this service this year.

From our own experience, we know how helpful support like this can be and again, this service has the potential to be further extended in future.

Furthermore, we have also earmarked additional funds to go towards a leukaemia research project at Great Ormond Street Hospital which we supported last year (see: http://www.teammargot.com/our-gosh-fundraise-goes-towards-elegant-research-project/)

The grants made by Team Margot Foundation 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.

Team Margot Foundation Trustees

Team Margot Foundation has four trustees who meet regularly during the calendar year. The trustees are:

James Cuthbertson, family friend
Charlotte Hathaway, Margot’s auntie
Nadia Martini, Margot’s auntie
Yaser Martini, Margot’s father

There are no salaries or expenses paid by Team Margot Foundation. All the trustees are unpaid, as are all the many other wonderful Team Margot volunteers & supporters around the world. Everyone at Team Margot strives to make a difference – 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.

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

Financial Donations and Fundraising and use & allocation of funds

As at 29 January 2016, the total fundraising and cash donations received during our first year amounted to £82,967.41 – which is amazing.

And this is just the cash raised and donated directly to Team Margot Foundation – the charity has also indirectly received almost as much financial support from private supporters and benefactors, in addition.

Team Margot Foundation was set up with two bank accounts at Charities Aid Foundation Bank (CAF Bank):

1. a working account – this account received £45,119.91 during the course of this year. It was originally funded by our family (who remain the underwriters) but is currently supported by generous corporate donors & private individuals who contribute to the marketing & promotional costs of running the charity. All such costs are paid from this account. The trustees have budgeted for the year ahead and will monitor & review the cash balance. Any funds that are surplus to requirements may be allocated as grant money.

2. a fundraising account – this account received £37,847.50 during the course of this year from generous donations and fundraising activity by the general public, including a £9,400 donation from The Cord Blood Charity. 100% of this money will be granted to the wonderful people and charities we support.

The reason for setting up 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 corporate donations received by Team Margot Foundation for marketing and promotional purposes (e.g. a £5,000 grant was received from Amgen).

The trustees felt this was 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 – more specifically charities and research related to bone marrow / stem cell transplants, blood disorders like leukaemia and those caring for child cancer patients. See ‘Grant Giving by Team Margot Foundation’ above.

It the intention of the trustees to maintain this structure and to continue to operate in this way.

Peer Review

A peer review of Team Margot Foundation was recently conducted by Neil Robertson, Chair of Trustees at Hope for Children (see: hope-for-children.org) 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.

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Together, saving lives

2015/16 Highlights

There have been many wonderful events and activities during our first year as a charity. Listed below are some of the highlights – please click on the activity / link for more information:

Of the 40,000+ people who registered either as a result of Margot’s appeal and / or the efforts of Team Margot, the first person donated peripheral stem cells in late 2014. My friend, Katrina Krishnan Doyle was the second such donor in early 2015, this time donating bone marrow. Last month, Delete Blood Cancer UK confirmed that to date, 98 people have now been potentially matched with a patient in need. 

Team Margot Blood Cancer Awareness Week (which became an awareness month)

Team Margot Donor Registration Events – Team Margot has held over 60 events, primarily working alongside the charity Delete Blood Cancer UK, who provide the DIY swab kits that enable people to register. Team Margot Foundation provides a ‘how to’ guide & pack to anyone who wishes to organise a donor registration event.

Team Margot School Presentations – Margot’s auntie Nadia regularly gives presentations at schools and has spoken to several thousand primary school children during assembly. Others at Team Margot, including Margot’s auntie Charlotte have adopted Nadia’s slides & script for presentations at their local schools.

The hospitality industry continues to support Team Margot and provides an awareness platform via it’s pubs, restaurants and accommodation:

Live Your Life Day
The Margot Room
La Tasca
British Institute of InnKeeping
Dark Star Brewery supports Team Margot

The Margot Martini Cup

Blue Kangaroo pays tribute to Margot in I love you, Blue Kangaroo ! and When I first met you, Blue Kangaroo ! 

Expedition Margot

Coast 2 Coast 

Team Margot heads for the Pyrenees

Vicki wins Inspirational Mother Award 

Martini Family wins Special Award for Outstanding Contribution

Team Margot Denmark

Team Margot Poland

Team Margot USA

Team Margot completes the Rolex Fastnet Race 2015

Team Margot does London to Paris

The Great River Race in preparation for the Celtic Challenge 

World Marrow Donors Association in Minneapolis 

Team Margot’s first Parliamentary Question to the Secretary of State for Health

Guest blog on Alastair Campbell’s website 

Town to Coast Charity Ride 

NHS Donor Recognition Ceremonies

Our Team Margot display box is adopted

Joint campaign with NHS Blood and Transplant 

I cannot possibly do justice to the many wonderful people and companies who continue to support our work by naming you all here, but from the bottom of my heart, thank YOU to all involved with Team Margot (you know who you are !) and in particular a special mention to those who make either one-off or regular financial contributions to Team Margot Foundation.

Lastly, I’d like to take this opportunity to thank the trustees of Team Margot Foundation for your love, fabulous efforts and contributions. It’s hard work running a charity ! and it simply wouldn’t work without you.

imageWe miss you, Margot. x

Yaser, Margot’s father

Chair of trustees

Team Margot Foundation
Registered Charity Number: 1160236


Posted in: Journal