Guest blog from a father who lost his daughter and wants to help others avoid the same fate
Posted on 2 July 2015 | 6:07am
“In business, you have politics and profit. In charity, you have politics.”
Or so the saying goes.
I have been in business and understand that sentiment, but charity is still pretty new to me, in the sense that our family just set up a charity earlier this year.
Of course, it’s not party politics that’s being referred to in the quote, but if you substitute the word “party” with either “charity” or “charitable organisation”, then from what I understand there really isn’t much difference. Power and money appear to be the root of what drives the politics in charity, although not necessarily in that order.
But does charity have to be this way ?
My daughter, Margot died in October aged two, after losing her battle with a rare blood cancer. Since diagnosis, doctors recommended that she needed a bone marrow transplant (a.k.a. a blood stem cell transplant) to stand the best chances of survival; that requires a donor with the same tissue type as the patient, and tissue type is linked to ethnicity.
Consequently, Margot’s mixed heritage was the key obstacle to her finding her “perfect match”. She fell into the category of people who are either mixed race or from the Black, Asian and Minority Ethnic (BAME) communities, for whom the chances of finding a donor with the same, identical tissue type are just 21%. By comparison, if you happen to be white and northern european, your chances of success are 69%.
We need more people on the stem cell registers.
I didn’t know any of this before Margot fell sick and I have since learned that I wasn’t alone. It’s a global problem: the general knowledge and awareness around the need for more stem cell donors is appalling.
That’s one of the reasons why we set up our charity, Team Margot Foundation – which is primarily about awareness and action. Simply put: we encourage people to join the stem cell register. Worldwide.
Margot was very unlucky, but through our work we will continue to help improve the chances & ultimately help save the lives of all those people who, just like Margot & our family, never thought that they would need a bone marrow transplant.
Margot’s appeal saw more than 35,000 people join the stem cell register in the UK alone and her story was covered in more than a dozen countries besides.
As a result of our work to date, we now know of 4 people who joined the register as a potential donor because of Team Margot and who have actually donated stem cells or bone marrow since. The chances are that we have already helped to save someone’s life and we’re told that statistically, based upon the numbers of registrants, more than 500 people will now have the chance of a potentially life saving bone marrow transplant over the course of the next ten years.
So what about power and money ?
Well, it was never our intention to raise money.
When Margot needed a bone marrow transplant, family and friends came together as Team Margot to help find her a matching donor and ask people 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 with fundraising. We wanted our message to be clear.
Nevertheless, we have come to realise that many people want to donate money and/or fundraise to support what we do: some because they’re ineligible to register, others because they’ve been touched or inspired by Margot’s story.
Thanks to their efforts, Team Margot raised almost £300,000 in 2014 for the various charities we in turn support.
That’s partly why we registered as a charity in early 2015 to continue to honour Margot’s legacy as a permanent Foundation. This enables us to better understand how funds are raised and donated – and to deploy them in the most beneficial ways.
Our family currently funds all operations, although we have applied for a few corporate grants to help mitigate the costs of promotional items like lapel pins, wristbands and sporting kit. We sell some of these items at our donor registration events to help raise money for the people and charities we support.
But Team Margot is still fundamentally a campaigning charity – we educate and inform about what’s involved with joining the stem cell register, we inspire people to register and then we ask them to encourage ‘Just One More’ to do the same.
And that’s it.
In this country we are working with all the known UK organisations in this field (Anthony Nolan, Delete Blood Cancer UK, NHSBT and Welsh Bone Marrow Donor Registry), yet whilst we are deliberately positioned to embrace them all (as well as the international registries too – it’s a global issue after all !) we are careful not to wed ourselves too closely to any one of them.
The key point here is that Team Margot is focussed upon helping the ‘greater good’. We don’t have any other agenda, nor are we fettered by anyone else’s, so in that sense we seek to avoid unhelpful politics and partisan behaviour.
Essentially, our ‘power base’ comes from the support that we have managed to garner from both the general public and also from celebrity / high profile personalities. We value and attribute great currency to ‘word of mouth’, which is where you & your own network might be able to help.
If you contact us with your postal address, we will send you some literature and a wristband so that you can take a picture of yourself wearing one, a bit like this: and then send the picture back to us.
We will hold off from using these pictures until the week before the 7th October, which is the day we will be celebrating our inaugural international as you can see here. Going forward, this will be an annual event. It’s aimed at making as many people as possible aware of the urgent global need for more people to join the worldwide stem cell registries. And then signposting the way they can help, regardless of where they live in the world.
If you would like to receive a Team Margot wristband, please email me email@example.com
Perhaps it’s naive to wish it, but I question whether our charity can succeed by being a bit different in approach. Alastair recently quoted Henry T Ford as saying: “Coming together is the beginning, staying together is progress, working together is success.”
To my mind, that makes sense for winning and succeeding in charity too, hence our strap-line: Together, saving lives.
Yaser Martini, Margot’s father and trustee of Team Margot Foundation
For more information, please visit: teammargot.com