Charity of the Year 2017

This article first appeared in the Information Point newsletter Our World in 2018.

When Christie & Co and Christie Finance decided to support a single ‘Charity of the Year’ in 2017, it was the first time that the company had focused its annual fundraising activity to a single cause.

The Myotubular Trust was a natural choice as Simon Hughes (whose son Zak has X-linked MTM) has worked for Christie & Co since 1987 so there was a strong personal connection. Simon’s colleagues at Christie & Co and Christie Finance had followed Zak’s 22 year journey since birth, also generously supporting the Myotubular Trust after it was founded in 2006 and regularly sponsoring the Myotubular Trust t-shirts.

Zak and Simon

Simon told The Information Point, ‘The idea was to raise as much money as possible over the course of the year by encouraging staff across the 16 UK offices to organise local fundraising events and despite most of them never having heard of myotubular and centronuclear myopathy, the initiative was immediately embraced by all. The profile of the ‘Charity of the Year’ was kept high throughout the year through regular email updates, articles in the company newsletters and mentions at internal meetings and conferences. Clients got on board too and were only too happy to support the fundraising events.

Christie and Co fundraising

We had walkers, runners, cake makers, raffles, dress down days and a variety of other things which in total raised well over £35,000. From the Company’s point of view, not only was it good to help fund the valuable work of the Trust but there was a real sense of teamwork in the successful completion of the various events.

My colleagues remarked how nice it was to fundraise for a charity where you could see a direct impact and difference being made with the money they raised’.

Christie and Co fundraising

David Rugg, Chairman of Christie & Co said ‘I am really proud of what our colleagues have done and are doing. Focusing our fundraising efforts for Myotubular Trust this year has unified the whole company, we are working successfully together in teams for a common, hugely deserving and worthwhile cause, which brings out the best in everyone.’

Further information

Learn more on the Myotubular Trust website.

BBC Radio 4 charity appeal

In 2017 the Myotubular Trust featured as a BBC Radio 4 Charity appeal. They told The Information Point about the appeal and why it was so important.

The Myotubular Trust were delighted to be featured as a BBC Radio 4 Charity Appeal on 29 October and again on 2 November.

The appeal was established in 1923 by Lord Reith, the first Director General with the first appeal airing on 17 February 1923, three months after broadcasting began. when an appeal was made for the Winter Distress League, a charity representing homeless veterans of the First World War, which raised £26 6s 6d.

 Nicholas Farrell

The appeal was presented by Nicholas Farrell, a British screen and stage actor who appeared in the Oscar winning film Chariots of Fire and can be heard on the BBC website.

Nicholas has been a good friend and supporter of the Myotubular Trust since he read at a Myotubular Trust Christmas Concert where he met Duncan and learned about his twin children, Will, born with myotubular myopathy and Isla, born a healthy girl. Very sadly, Will died just before his third birthday, from complications from a simple cold. Although his sister Isla is unaffected, she could be a carrier of the faulty gene causing myotubular myopathy, with the risk of passing it on to her own children.

Will and Isla

‘Given its rarity, the condition attracts no public awareness or funding – all money raised by the Myotubular Trust has come from affected families, their friends and supporters, so hearing the appeal on the BBC airwaves was surreal – clearly we knew it was coming but have lived in this world of an ultra rare condition for many years now and acclimatised to it being a grassroots effort. Hearing it described, even in the few minutes allowed in the script, on Radio 4 airwaves was a bit of an out of body experience.’ – Anne Lennox

The Myotubular Trust would like to thank everyone who listened to the BBC Radio 4 Appeal for their support and especially Duncan and Claudia Collins, Will and Isla’s parents, for generously sharing their story.