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.
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.
‘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.