November 20, 2014

Team Margot addresses The Sohn London Conference

By

SOHN

 

Earlier this year, I was privileged to be invited to speak at the Sohn Conference by one of the London committee, Manuel Stotz.  Yesterday, the 3rd Annual Sohn London Conference took place – it was organised by Bloomberg & was held at The Marriott hotel in Grosvenor Square.

The Sohn Conference Foundation was established in 1995 after Ira Sohn, an extremely talented and well-known Wall Street professional tragically passed away from cancer at the untimely age of 29. Since it’s inception almost 20 years ago, The Foundation has raised over $50 million dedicated to the treatment and cure of paediatric cancer.

This conference is a big deal in the financial world and yesterday over 400 of ‘the great and the good’ attended what amounts to being a bit like a financial ‘speed dating’ event, combining short presentations by fund managers with break-time for networking; it also always includes a charitable involvement.

Yesterday’s conference included both a Royal Marsden and also a Delete Blood Cancer UK stand and I was asked to speak before the first break, with a view to encouraging people to swab & register at the event during the breaks.

With Peter Harf at our East Sheen donor registration event in February this year

With Peter Harf at our East Sheen donor registration event in February this year

I attended the conference with both Vicki and my sister Nadia, who co-founded Team Margot with us. Peter Harf, founder of DKMS (Delete Blood Cancer UK’s parent) introduced and welcomed me on to the stage.

Having written and pre-rehearsed what I wanted to say at home, standing at the podium and in full flow, I suddenly found the delivery more challenging than I had anticipated and I choked up on a couple of occasions.

I’m told a video of my speech will follow, but in the meantime, a transcript is below. Whilst I was on stage, a silent slideshow was running in the background and at the end of my talk, we played an amended version of Margot’s appeal video.

Delete Blood Cancer UK told us today that they registered 82 people at the event and they also received donations of just over £2,000.

Wonderful.

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Good afternoon ladies and gentlemen

Thank you so much Manuel for inviting me to be here today, it’s a real privilege to speak in front of such an august audience and on something I feel so passionately about. Thank you also to Thomas Nienaber at Arrowgrass, who is somewhere in the audience, he is a great friend and a first class human being – he’s the chap who first told me about Delete Blood Cancer UK after hearing Peter Harf speak at this conference last year.

What prompted Thomas to make that connection ?

Well, my daughter Margot was diagnosed with an extremely rare form of leukaemia in October last year – she was 14 months old at the time. We were told by the doctors that they had only seen three cases like Margot’s in 10 years, so there was very little data on her condition and they explained that for her to stand the best chance of beating this blood cancer, she would need to have a stem cell transplant or a bone marrow transplant as it’s also known.

OK – What’s involved ?

“First, you need a donor with a matching tissue type.”

Alright. How do we go about finding a donor ? I was totally clueless at the time…

“Well, you need to rely on the selflessness and benevolence of others and hope that someone with a tissue-type that exactly matches Margot’s, joins the registry…”

Initially, there was some hope that Margots two brothers would provide a match for her. Siblings offer roughly a 30% chance of doing that. In the event, that wasn’t to be and so, given that there wasn’t a match for Margot within our immediate family, we started a campaign to find one.

Margot’s tissue type was such that we weren’t able to target specific communities, so on Christmas Eve, Team Margot launched a general appeal for the public to do something amazing : register as a stem cell donor and potentially save a life; it could be our daughters. We sought the benevolence of the people; we didn’t ask anyone for money, even though each registration costs £40. Delete Blood Cancer UK made the whole process simple & painless : it involves a swab of your cheek to obtain your tissue type, which can then be included on the database and in the search process.

Margot was one of the 1,800 people in the UK this year desperately seeking a stem cell match and unfortunately too few ever succeed in finding one. Basically, it’s a numbers game – the more people that register, the greater & more diverse the pool of potential donors, and the more lives will be saved. Of course, Vicki, my wife & I hoped that our appeal would increase the chances of helping Margot find her perfect match. We knew from the outset that there was only a slim chance of this happening, but given the circumstances, we felt that a slim chance was better than ‘no chance’. Remarkably, with everything that was going on at the time Vicki, who is a much better person than me, also felt strongly that she wanted to give something back for the sake of others…

The public response to our appeal was unprecedented : in the UK alone there were over 50,000 requests for DIY swab kits during those 6 weeks – nobody expected that ! and Margot’s appeal generated & attracted international interest and coverage in 12 countries besides.

Based upon our work with Delete Blood Cancer UK alone, statistically over the course of the next 10 years there are likely to be more than 500 people who will benefit from potentially life saving bone marrow transplants. That’s fantastic – we moved the needle – but really, it’s only just scratching the surface.

There is so much more to do.

During this time Team Margot worked very closely with Delete Blood Cancer UK who do great work : they recruit potential stem cell donors and process their swabs – and they also did everything they could to support us during what was a very difficult time.

Only 50% of people with a blood cancer ever find their matching donor. Only half. Team Margot is committed to continuing to raise awareness around the need for more stem cell donor recruits and in particular more recruits with mixed race. Margot’s unusual race mix was the reason why it wasn’t possible to find her a perfect donor match. We are continuing to work with Delete Blood Cancer UK – we want to help save the lives of those who, just like us, never thought they would need a bone marrow transplant.

We are extremely thankful to the charity for everything they have done to help us, not least that they eventually managed to find our daughter a suitable match on their sister database in Germany. Sadly, as we now know from Margot’s own experience, there are no guarantees – our daughter Margot passed away last month – however, the point is that as a result of finding her donor match, Margot was given a second chance at life and she had additional time at home with loved ones. Our family will forever be unspeakably grateful to her anonymous donor for his miraculous gift.

And that, ladies and gentlemen, is where YOU can help.

Right now, there are more than 37,000 people worldwide who are desperately seeking a stem cell match. Just like Margot was earlier this year.

YOU could be a match for one of those people & YOU could save a life.

You will have noticed outside that Delete Blood Cancer UK are here, set up and ready and if you’re eligible and haven’t already done so, before you leave the building you can actually do the necessary – right here today – and join the stem cell registry. Once you’ve done that, the chances are that you may never be asked to actually donate your stem cells. On average, there is roughly a 1 in 1,200 chance that you might be called upon to actually donate your stem cells. Of course that would be a sacrifice, but your stem cells quickly replenish themselves and again, the short term inconvenience might mean that you save someone’s life.

That’s almost all the talking I’m going to do, but before I step down, I wanted to show you Margot’s appeal video – the video I am going to play for you is essentially the same one we used for Margot’s campaign and in case I haven’t succeeded already, then hopefully this will help warm you up to the idea of taking action in one or more of the following three ways:

FIRSTLY: joining the register personally, either here today OR by registering online to receive a DIY swab kit at home

SECONDLY : perhaps you might consider holding a donor registration event within your own organisation, to encourage those in your workplace to join

THIRDLY : donating money to Delete Blood Cancer UK and / or doing some fundraising to help them pay for all these registrations

So, here’s Margot’s appeal video; it has been seen on YouTube over 115,000 times.

Please register. Swab. Save a life.

And if you’re ineligible, or have already registered, then please encourage ‘Just One More’ to do the same.

Thank you all very much for listening.

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

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